clevermanka: default (going well)
clevermanka ([personal profile] clevermanka) wrote2015-10-27 02:23 pm
Entry tags:

It's not cancer

Not likely to be, anyway, so let's at least know that's off the table. The news is super shitty, though, and it's taken me over 24 hours to get to the point where I feel like I can put any of this into writing. Not only do I lack the language to communicate this (more on that later), but I know that the act of communication, makes the situation more real to me, thus putting me in the predicament of being even more inarticulate with my emotions.

Not only that, but the information from a live blood analysis I got on Friday keeps getting obscured and overwhelmed by the more immediate impact of Monday's discoveries at my consultation with the OBGYN surgeon about my fibroids.

This could be a very disjointed post.

Facts, as presented to me by the microbiologist who did my live blood analysis on Friday: I have Rouleaux, which is a blood condition where my red blood cells link themselves together (in my case, tightly stacked horizontally in long chains--like candy necklaces) and (in my case) form weblike structures. As you might imagine, this causes some basic problems. Like the inability of oxygen to easily travel around in the blood. Other issues showed up in the analysis, but the Rouleax is the big one, and is probably the first domino. Symtoms of Rouleaux are things like constant immune reactions, increased allergic responses, and fatigue. Causes of Rouleaux can be...tumors.

Which brings us to--

Facts, as presented to me by the OBGYN surgeon on Monday: The fibroid Dr. Harris found is much larger than I thought/understood. It's as big as my uterus and has basically taken over the entire back muscle of the organ. It is inoperable and cannot be removed. There is another, smaller fibroid and a polyp in my cervical canal. This might be operable, but the removal would be superfluous in light of the presence of the other, larger fibroid. I think we can all make the connection to that fibryod cyst (a type of tumor) to my painful and heavy periods. But can I make a connection between it and my autoimmune disease (and everything that has gone along with that)? Maybe. I'm using this as my own way to understand, so just come along for the ride with me, here, and tell me if you think I'm off-base.

My current thoughts on how I got here:

Hormonal birth control fucked me up. Studies are showing that HBC takes a serious toll on one's body, especially the adrenals. I believe it. I never had serious health problems or even environmental allergies until I was in my late to mid-20s. I mean, I was kind of frail, but I was active and high energy, if not athletic. I realize allergic developments in one's twenties is a fairly common thing, but you can't deny there's allergies and then there's my allergies. Anyway. I know the pill made me literally and immediately sick because the last several months I took them (nearly two years) were a constant search for a brand/dosage that didn't give me morning sickness. I'd been on them for years (nearly a dozen) before I finally gave up and started taking DepoProvera shots. All it takes is looking at a calendar to point to the fact that my thyroid issues started up right around the same time I started getting Depo shots. I point to HBC (the pills and the shots) as the thing that jump-started my autoimmune problems (allergies) and thyroid/endocrine issues (glandular stresses). I believe hormonal birth control is largely responsible, if not the number one direct cause, of my health issues today. Guess what the OBGYN surgeon told me was the only other option for dealing with fibroids like this, apart from a hysterectomy? Hormonal birth control.

I am faced with the choice of removing an organ that I very much do not want to remove, or put into my body (for basically the rest of my life, or until I remove the organ) what probably caused 90% of my daily health problems today.

I am taking both these items of information (yeah, both—see, you forgot about the Rouleaux business too, there, didn’t ya?) to Drs. Khosh and Jonah, but I need to make my decision within three weeks or I’m screwed insurance-wise. Anyway, I can’t imagine any herbal treatment that actually shrink and remove cysts. If I’m wrong on that, pipe up in the comments, but I want solid research and reviewed reports, not hippie websites.

Whew. I feel better. Not good. I don’t feel like I just got punched in the stomach, at least. It makes it more real, but it also makes it a little easier.

Yesterday, when I was dealing with the emotional fallout from the surgeon’s report (as well as the physical discomfort from having a fucking uterine biopsy), I had no idea how I was going to write about this. I even groaned to [livejournal.com profile] mckitterick, I have to write about this. He told me I’d feel better afterward, and I have to admit I scoffed. A little. But now that I’ve written it out, now that I have my language for it, it is easier to process. He was right. I can’t emotionally process something without appropriate language. I guess it comes as no surprise that communicating basic facts about my situation is the best way for me to emotionally process it (Vulcan 4lyfe).

So here we are at a new stage of Finnegan Begin Again. This time, it's a physical crisis coupled with emotional growth! My favorite.
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[identity profile] ms-danson.livejournal.com 2015-10-27 07:29 pm (UTC)(link)
Wow. Shit. *HUGS* *much virtual wine*

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[identity profile] saffronhare.livejournal.com 2015-10-27 07:30 pm (UTC)(link)

You wrote a thinky post, and this is my listeny reply. Didn't want to wait until I could figure out what to say, because WOW. HUH.

[identity profile] clevermanka.livejournal.com 2015-10-27 07:34 pm (UTC)(link)
Tomorrow I'm posting a call that's basically HYSTERECTOMY PEOPLE TELL ME YOUR STORIES.

[identity profile] splix.livejournal.com 2015-10-27 07:44 pm (UTC)(link)
Well, fuck. :((((( Did the dr. discuss embolization for the big fibroid? If his only response is that it's inoperable, I'd recommend getting a second opinion. But if that's truly the case and you only have the two options of hysterectomy vs. HBC, I'd take the hysterectomy, given your history.

Granted, I've had one, I didn't need my uterus, and it was riddled with cancer, so I just wanted the fucking thing out, so maybe take this with a grain of salt.

[identity profile] clevermanka.livejournal.com 2015-10-27 07:49 pm (UTC)(link)
She did say something about embolization, but I only remember it being "this is not a likely option" since the fibroid is actually in the actual muscle of the uterine wall. It's not a convenient exterior tumor. I am willing to ask her about it again, though, just to clarify, thanks.

I'm putting up a post tomorrow, asking for input from people who've had hysterectomies, so I would love you to chime in with TMI details if you have the time/inclination to do that then.

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[identity profile] gentlespirit.livejournal.com 2015-10-27 08:08 pm (UTC)(link)
I hope that it did help to write about it. I always have the desire to somehow try to fix things or make them better, and in this case I don't know what to do other than say that I'm listening and thinking good thoughts for you.

You are a confident, capable woman and while this is not something that I would want anyone to go through, I'm certain that you will make an informed, thoughtful decision.

Feel free to drop me an email or something if you want to chat about anything. Or be distracted. Or whatever you need! <3 (gentlespirit at gmail)

[identity profile] redheadfae.livejournal.com 2015-10-27 08:40 pm (UTC)(link)
I was waiting to see what was up after I was told that someone had seen you yesterday.
Pfft. You can beat this down, too. Fucking bodies. That RBC condition is an entirely new on on me, too.
I only have one friend that I know of recently who had a hyster, but I can ask her to email you, if you like. She's a fab gal who had this done last year due to horrible problems.
As long as they let you keep your ovaries.. go for it. No more Red Wall of Deathly Pain!
Them's no Bon Temps Rouleaux, are they?
Couldn't resist, :ducks:

[identity profile] clevermanka.livejournal.com 2015-10-28 05:28 pm (UTC)(link)
Oh, yes, please have her email me.

I am Incredibly Concerned about the lack of uterine contractions during orgasm. It's no surprise to you that my orgasms are Really Super Important to me, and I'm not happy with the idea that I might have diminished orgasms for the rest of my life.

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[identity profile] hdsqrl.livejournal.com 2015-10-27 09:03 pm (UTC)(link)
Oh, GIRL. And to Clevermanka's body, I say, WITAF? Sigh.

And one more sigh, and then I offer: You've got this. Because, really, you do. There's no other option than for you to beat the hell out of all of this and win all of the...everything.

<3
Edited 2015-10-27 21:03 (UTC)

[identity profile] clevermanka.livejournal.com 2015-10-28 05:28 pm (UTC)(link)
Image
Edited 2015-10-28 17:29 (UTC)

Holy !!!

[identity profile] thetimesink.livejournal.com 2015-10-27 09:55 pm (UTC)(link)
Well, it's not like you're going to let this slap you up the side o' the head without taking a 2 x 4 to the situation at large...

Male, no experience in this one; but plenty of people-time, so yeah, you'll be working this one over. We'll help.

[identity profile] msmitti.livejournal.com 2015-10-27 10:02 pm (UTC)(link)
holy smokes! That is a bunch of stuff to take in. At least you know which direction you need to head into. Good luck with your research and decision making.

[identity profile] clevermanka.livejournal.com 2015-10-29 01:21 pm (UTC)(link)
Thanks, bb.

[identity profile] write-out.livejournal.com 2015-10-27 10:14 pm (UTC)(link)
I'm glad you found your words and have been able to better process all of this SHITTY FUCKING NEWS. I am so sorry, friend. Fucking bodies. (gentle hugs) Those biopsies are no fun at all. None of this.

In my personal experience with fibroids and polyps, surgery was my only known and viable option and so that is what I went with every time. I know of no other treatments, so no hippy dippy stuff from me.

What a choice. Did the surgeon say anything about your ovaries? Again, I am so sorry you have to make such a decision and so quickly. I hope you're able to get some more solid information from your other doctors and soon.

I'm here to listen, to punch something, whatever you need.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:30 pm (UTC)(link)
I would get to keep my ovaries, yes. And the call for hysterectomy stories is up, so feel free to chime in anytime!

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[identity profile] kazoogrrl.livejournal.com 2015-10-27 10:58 pm (UTC)(link)

Suckity suck SUCK!!!!


*thinks for a second*


Fuck this shit!!!

[identity profile] curieuse.livejournal.com 2015-10-27 11:48 pm (UTC)(link)
I'm so sorry - what a lot to process. I know two people who've had hysterectomies they are glad about in hindsight, but I know it's not an easy decision. Ditto what others have said re: benefits of keeping ovaries if possible. Echoing too what everyone is saying about listening.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:33 pm (UTC)(link)
I would get to keep my ovaries, THANKFULLY.

Please tell your friends if they're interested in chiming in about their stories, I welcome the input. I posted the request for stories today and anonymous commenting is turned on for the next week or so, so they don't need to have LJ accounts.

[identity profile] etcet.livejournal.com 2015-10-28 01:33 am (UTC)(link)
here's a sword and a shop-vac and max rockatansky with an improvised blood IV; you've kicked this much ass so far, this might be all you need.

*fistbumps and tea*

[identity profile] clevermanka.livejournal.com 2015-10-28 05:33 pm (UTC)(link)
That's a nice arsenal, there. Yep.

[identity profile] manintheboat.livejournal.com 2015-10-28 01:36 am (UTC)(link)
I have all of those things and share all of those feels!

Except they won't let me do a hysterectomy and I'd do it in a heartbeat.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:34 pm (UTC)(link)
I am hugely concerned about how this will affect my orgasms because I have Fucking Amazing Orgasms and honestly they're one of my great joys in life...

[identity profile] daasgrrl.livejournal.com 2015-10-28 01:39 am (UTC)(link)
I have nothing but fairly useless sympathy. I'm glad that writing it out helped a little. I didn't know about HBC, but I feel you on hating it - I was on it for maybe five years, but it just wasn't worth feeling so bad so consistently.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:35 pm (UTC)(link)
I would like to go to every doctor who failed to mention IUDs as an option to me and punch them all in their stupid faces.

[identity profile] pointoforigin.livejournal.com 2015-10-28 01:54 am (UTC)(link)
OMG I'm so sorry. As always, I appreciate your courage and determination to think, speak, figure things out and keep going. I'll contribute my hysterectomy story on request, FWIW.

[identity profile] chalcedonygrey.livejournal.com 2015-10-28 02:11 am (UTC)(link)
Image

Echoing everyone else above. Here for you, and will gladly chime in tomorrow on the hysterectomy-verse.

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[identity profile] poincaraux.livejournal.com 2015-10-28 03:00 am (UTC)(link)
I got nothing except ... fuck ... that sucks.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:38 pm (UTC)(link)
When my uterus decided to grow something in there, damn it, it decided Go Big or Go Home. #neverdoanythinghalfway

[identity profile] apocalypticbob.livejournal.com 2015-10-28 11:29 am (UTC)(link)
Well,
Fuck.

I don't have anything useful to add. Just empathy on the shitty news, and the knowledge that I'm thinking about you.

[identity profile] renniemom.livejournal.com 2015-10-28 01:31 pm (UTC)(link)
^^This.

You are a warrior surrounded by an army to help you maintain balance. Keep processing and exhausting your resources and know that we are all here, thinking about you and loving on you (and pouring wine as appropriate and necessary).

Damn. What a load of suck. I'm sorry it dumped on your life.

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[identity profile] kalimeg.livejournal.com 2015-10-28 02:15 pm (UTC)(link)
Oh all the allergy news combined with possible reasons. Makes the head want to pound a desk, it does.

Tomorrow (probably actually today) for TMI, I haz it. I wondered early in your narrative if that was one of the options.

[identity profile] clevermanka.livejournal.com 2015-10-28 05:39 pm (UTC)(link)
Yes, please comment with your story! Thank you. I put up the post this morning, so it's ready for input!

[identity profile] 1-rhiannon-1.livejournal.com 2015-10-28 05:10 pm (UTC)(link)
I saw your post asking for hysterectomy stories, and now I see why. Holy shit, doll, this is a lot to digest and have to think about. I have not been through what you are going through, but I wanted to let you know that I'll be thinking of you and wish you the best of luck in making a decision!

[identity profile] seascribe.livejournal.com 2015-10-28 11:48 pm (UTC)(link)
Shit, bb, that is a lot to deal with. I'm glad you got it written up, and I hope that the physical crisis resolves as easily as it can. *a whole bunch of hugs*

[identity profile] clevermanka.livejournal.com 2015-10-29 01:23 pm (UTC)(link)
Image

(Sorry I couldn't find a gif of your beloved)

[identity profile] mundungus42.livejournal.com 2015-10-28 11:58 pm (UTC)(link)
*enormous hugs* Well, I'm really glad it's not cancer. But there is no happy answer when faced with the choice of major surgery or going on meds that you already know make you sick. I read today's post, and though I have no personal experience to add, I found what others wrote to be encouraging, and I hope it makes the choice one between not fun and shitty as opposed to choosing between shitty and shitty. You're very much in my thoughts. Here's wishing you good news after all this insanity.

[identity profile] clevermanka.livejournal.com 2015-10-29 01:23 pm (UTC)(link)
I hope it makes the choice one between not fun and shitty as opposed to choosing between shitty and shitty.

This is a wonderful sentiment. Thank you!

[identity profile] http://users.livejournal.com/_luaineach/ 2015-10-30 02:12 am (UTC)(link)
I'm only getting to reading LJ for the first time this week right now. So late to this party and not much to say but ..... :( .... I don't know. ::hugs:: and <3.

[identity profile] clevermanka.livejournal.com 2015-10-30 01:29 pm (UTC)(link)
Thank you!

[identity profile] stuology.livejournal.com 2015-10-30 02:09 pm (UTC)(link)
I wish I had not been so absorbed in myself and hiding out from the internet because I missed this when you posted it.

I have no personal experience in this area to share to alleviate concerns either. But, it looks like you did get quite a few, which as I read them, seemed to point to having a hysterectomy as not as bad of a choice as thought.

Fibroids also cause gas and bloating, such that people describe themselves as looking like they are pregnant.

What if this gets rid of both your painful periods which you dread dealing with -- the waking up at night sweating with pain -- and the not knowing if you are going to be able to button your pants and having to limit yourself to wearing only stretchy things and being able to bring back some foods you like because they weren't actually the cause of your digestion ills? Is the relief of that reoccurring pain in your life worth the chance that it may lessen your most pleasurable thing in life?

That isn't an easy choice.



[identity profile] clevermanka.livejournal.com 2015-10-30 02:15 pm (UTC)(link)
Ah, sweets, don't worry/wish a bit about it. You've got your own shit going on. It's cool.

I've been leaning toward the hysterectomy option since the first, but like you said--not an easy choice. It's not a choice I want to make at all but oh well.

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[identity profile] aprilstarchild.livejournal.com 2015-11-08 09:43 am (UTC)(link)
And on the other side of this: the cancer my mom had? One of the things that lowers risk is being on hormonal birth control. Between that and my periods becoming less pleasant as I get older, I'm strongly considering switching my IUD to a mirena after all.

I know my responses are spotty and weird because of how late I'm commenting on shit (I'm literally just reading backwards on your posts) but oh man, I'm glad you have some answers, AND I'm sorry you've been through so much bullshit around your health.

[identity profile] clevermanka.livejournal.com 2015-11-08 09:06 pm (UTC)(link)
Thanks, bb! And it's so nice to see you here again!

[identity profile] chronovore.livejournal.com 2015-11-11 01:10 am (UTC)(link)
This sucks. It sucks really badly.

But I'm happy that it's not cancer.

[identity profile] clevermanka.livejournal.com 2015-11-11 02:40 pm (UTC)(link)
ME, TOO.

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