Decisions, Decisions.

I make the best boob cake. For reals.
Just ask my husband.

One of my goals for 2013 is to finish (or at least have at least 70% done by when I turn 40 later this year) writing about my personal experiences with triple negative breast cancer. I figure that although I hate puky pink breast cancer awareness month (because we have way too much awareness and not enough action), marketing a book or two or at least some freelance articles for boob cancer month might be nice, since it'll be my 10 year anniversary in November and I'd love to fund a fun party with homemade boob cake for lots of friends. Seriously.

(FYI - boob cake is best when it's red velvet with whipped buttercream icing. Also, it's fun to see the expression on the faces of people during the eating process.)

Naturally, I've been going back and forth for years about how to best get everything down. I know that I want to make it relatable for patients, caregivers, and families with easy-to-understand medical jargon. I also want to make it clinical enough to educate medical professionals and researchers from a patient's point of view. I originally thought that I'd just publish the blog I wrote for a few years through everything, but then I thought about publishing more of a narrative story kinda chickeny soupy like, and then I thought doing both at once could bring in more fundage and move me to New Mexico more quickly.

Long story short, I have a better grasp of what I want to include (stuff like autoimmune crap and prescription roulette and caregiver burnout and worries about income and employment along with surprise breast cancer at age 30), but I'd love to get some feedback about the styling. I've asked this already, years ago, but I'm asking again since I know lots more people now, I'm back to indecision, and I want to use my time this year as effectively as possible.

So:

Narrative, Blog (edit: without so many exclamation marks and with lots more cutting to a decent size), or Both?

Examples below. Tell me via comment for this entry on my Facebook page (facebook.com/lindasbecker). Thanks in advance.

NARRATIVE:

July 2004 saw me getting back into a semi-normal life routine of never-ending visits to physicians. Dr. Onco (my oncologist) thrilled me by being so excited about my hair growing back! There wasn't much, but I definitely had an externally fuzzy head. The internal thought fuzziness still lingered but at least I got cuter.

He again suggested that I look into genetic counseling, since the BRCA 1 and BRCA 2 genes are often found in people who have the type of cancer I had, and I promised that I would look into it. I also decided to look up the gynecologist who did my laparoscopy in 1998 as Dr. Onco thought my increasing pelvic pain was likely due to endometriosis acting up again. I really didn't want to deal with it and I wish I could've stayed in faux menopause, but there was no way I'd go through chemo again just for that sweet relief.

My visit to Dr. Gyno frustrated me so much that I fired him (without telling him so). The options he gave me were to do hormones (nixed due to the breast cancer), get pregnant (no way in hell), or have another surgery, and so the approach was to wait and see. I liked Dr. Gyno and I understood his perspective since nothing abnormal showed up on any of the tests he did, but at the time I wanted good options and I wanted them right then. I did not want to wait until September for a reevaluation. Having pain in the exact same spot for seven years got more than frustrating every so often, and the visit was on one of those days.

You know what really sucked most of all? Getting the pelvic exam done by a guy gynecologist. Sorry but not having the same parts as the parts being examined makes a significant difference in post-procedure ouchiness.

BLOG:

Tuesday, July 13, 2004 | 7:05 PM

Good news – I saw my oncologist yesterday and not only was he very happy that my hair is coming in super-duper fast (!), but both the CT scan and MRI were clear! He did poke and prod me though, and after all was said and done, he feels that my pelvic pain is the endometriosis still, which seems the most likely explanation but would be odd since I’m still in menopause, and endo is supposed to go away at menopause. Since the pain has varied from day to day, week to week, and has felt different (from sharp and stabbing to cramping to dull and toothachy, and back, etc.), he reminded me that my hormones and body chemistry are still out of whack from the chemo, and suggested that I get checked out by a gyno soon since I didn’t need to be in this sort of pain. I’m probably going to look up the gyno who did my endo surgery some years ago, as he’d have my records from then anyway. Perhaps it’s just adhesions everywhere. He also suggested genetic counseling again (to see my risk of ovarian cancer since it’s related to breast cancer), so I need to find that paperwork and get that done.

Otherwise, things are good. I still have sharp shooting pains where the tumor was, I’m peeling where the radiation has tanned me, and the skin is kinda itchy there but it’s not terribly bad. I see my oncologist again in four months, and he also said yesterday that I might start to start feeling better energy-wise in six months!

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Monday, July 19, 2004 | 6:42 PM

This morning I saw the gyno who did my laparoscopy in 1998. After the usual "well woman" tests and a sonogram, I found that I don't have any cysts or anything, my ovaries and the rest of my junk looks normal, and I could still have endo or maybe not - it's too fine to show up on the sonogram. The current advice, again, is to "wait and see." This doesn't sit well with me, as I've had this pelvic pain in the exact same damn location for, oh, *looks at watch* SEVEN YEARS NOW. Dammit.

I have three treatment choices to choose from. One - hormones. They took me off the pill due to the breast cancer, so scratch that. Two - pregnancy. Yeah, right. This doc knows that we're not going to start a family intentionally, so that's out too. (Besides, he told me in 1998 that I should try to get preggers within a year or two, as I may not be able to in five, and it's past five years now.) Three - surgery. He's not keen on another surgery, but we'll reevaluate in late September. Grrmph.

I'm also looking into any other possible explanation for the pelvic pain, since I haven't menstruated since January. A hernia? Osteitis? I don't know!!!! I do apparently have a yeast infection, although I'm not experiencing any burning or itching, so I have a week of treatment with plungery stuff. I'm thinking that it might be due to either the spermicide, the antibiotics I took recently, or maybe an increased cereal intake (candida supposedly thrives on breads, so maybe grains too?). At any rate, that's just one more thing I didn't need to deal with.

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Tuesday, July 27, 2004 | 5:29 PM

The pelvic pain has seemed to have gotten better lately, which I'm thankful for. I was *really* hurting the day after the recent exam, probably because a guy gyno did everything (no offense but you guys don't have the mechanics we do, especially down there). Everything turned out well overall, and my overall skin exam with another new doctor (dermatologist) went fine too! I just have benign stuff going on there - on my statement I've been given three different codes under "diagnosis" for 1) angiokeratoma, nevus site unsp., 2) hemangioma and 3) dermatoheliosis. The aged skin I apparently have isn't from laying out in the sun, so I think it's probably from the floreluminescenty lighting at all of my workplaces over the years. Crap. At least I still look like I'm questionably 21, since I got CARDED last Wednesday!

What's funny is that my radiologist goes to the same dermatologist I'm now going to. I see him in the morning for a checkup, and I'm sure that'll go smoothly. The affected boob is doing just fine although my nice tan from the radiation is going away. I'm still feeling some shooting pains there from time to time, where the tumor was, but it's nothing a Darvocet can't handle.

My hair is growing back still and is now long enough for me to have bedhead! I'm also now published, kinda - Planet Cancer posted my breast cancer haiku on their insights page. Nifty!

Dammit, Linsanity should refer to ME!!!

NOTE: This is gonna take a while, so you might want to get some snacks.

Seriously, go get some snacks. I'm rambly in this post.

NOTE TWO: This also gets a bit TMI, so if you're squeamish, just skip the paragraph that starts with me rambling about being on Cipro. Or stop with the snacks then. You're welcome.

Why that title? Because within the last month and a half, I have not only lived more non-stop than I have in 10+ years, but have also been *able* to live more non-stop than I have in 10+ years.

See, I've dealt with fibromyalgia and endometriosis for 10+ years now, plus have been married (to the same guy!) for 10+ years, and life is greatly improved back to back in the day thanks to new meds and supplements I won't bore to list (except to say praise Shiva for NAC plus the serious cost-effectiveness of generic Deplin and Provigil).

So guess what's happened in the last month and a half?

Let's see... started new awesome job a week and a half before their centennial annual meeting (and fiscal year end, and if that's as stressed out as everyone gets at once then I am hella set as soon as life simmers down)....

Wait a sec. I should probably mention that I haven't been able to work a 40 hour work week since two jobs ago, since before I went to part-time in May 2007. (Yay for better living through chemistry!) I should probably also mention my fifth interview for my new job (phone, panel, boss, HR, boss's boss) started with getting to know some lovely women in a kinda cramped and stuffy restroom over 45 minutes while waiting for some tornadoes to pass overhead. (Everyone who was in there that I saw on my first day even remembered me when I was introduced around the building!)

I've also had the usual May Routine Doctor Appointment Slam-o-rama, except this has been freakin' nutso, even for me. Tomorrow will make the 11th appt in 4.5 weeks. This doesn't sound so bad, except that since I'm new, I can't take any accrued time off until mid-October (my six-month mark), and I'm getting to make up all the time I'm missing by staying late most days. (My new boss is so generously awesome with that, and with letting me adjust my hours to 8:30-5:30 because the stupid Sjogren's/fibro fatigue is so unpredictable and it's so much worse in hot weather and it's been 94ish for some days now and I get more puky than usual since I'm on Cipro... woo, tangent.)

Imagine, if you will, already trying-to-stay-not-so-fatigued me working a full work week, trying to keep working a 5 hr per week part-time job (and having to give that up, boo!), and seeing my primary care PA and rheumatologist and dermatologist and eye doctor and boob surgeon plus seeing some wonderful guys who work me with Active Release Techniques and sports therapy exercises in a non-woo evidence-based chiropractor office many many many many many times for the usual ribs popping out from new desk ergonomics and running way too non-stop in life. With a few evening massage appointments thrown in to help with the A.R.T. and chiro stuff. All within four weeks. While working extra to make up time. And learning LOTS of things on the job and making forms and tools to help me learn things. And I have eye doctor part two tomorrow.

Yeah, Linsanity should DEFINITELY apply to me more than that tall asian guy, dammit. One of my friends commented that it sounded like I was being chewed up like a dead hooker in a wood chipper. I thought this was pretty apt, except it'd have to be after being sliced and diced by my pimp. For reals.

Oh, and last week a relative in my immediate extended family passed away and I wasn't able to go to the funeral or graveside. I'd only seen him twice over the last 6-7 years but I have some great memories of him from when I was a wee bohemian, and he's very missed. I also had to officially give up (for now, dammit) my part-time job full of awesomeness that I'd missed doing for 6 years. Not only am I once again out in the liturgical cold, but I don't get my weekly dosage of awesome gayness. (There is fabulous gay, and there is awesome gay. I'm so friggin' sad about this, y'all.) Not only that, but working there helped me to realize that it was still possible for me to work and be productive in spite of craptastic health crap, and that did wonders with boosting my self-esteem and morale while faghagging. (There is also a definite probability that in the near future, previously kinda mentioned immediate family will meet up with other awesome gay in a business venture, so that's something I'm looking forward to when I can think about having energy again.)

Did I mention that I was in the presence of The Surgeon General of the United States on the same day I was in the presence of The Bloggess? Yeah, that was flippin' sweet! I'll have pics up someday. Check back around Yule. I might have something up then.

Oh yeah, breast cancer recurrence scare. I'm 8.5 years boob cancer free, and the type I had was stage IIA T2 N0 M0 grade 3 triple-negative. The last .5 year has been interesting with surprise spontaneous unilateral discharge (natually on my affected side) and ductogram and Aurora MRI, and let me tell you how amazing it is to talk with health insurance people when it takes 10 referrals before they, ahem, you find a place that does the special MRI that's needed, which was the place your surgeon's office tried to recommend in the first damn place the week prior but they would only talk with you instead of your physician's office. Also, let me share how spectacular it is when 15 different sets of customer service agents in various departments (Claims, I'm looking at you real hard) can't find your certificates of coverage that have been on file for more than a minute. All of these people are special in a really special way. (Note to self: make sure those idiots paid my pcp from that appt last May.)

(And that's special, not special. As in the state of being distinct, not the designation of a species.)

(Yes, my brain is a little tired. It's the feeling-like-crap from Cipro and adjusting pill-up times to avoid taking it with anything calcium/magnesium/aluminum. I couldn't even soak in epsom salts tonight because of my near-shortsightedness.)

Oh yeah, I'm on Cipro (TMI alert; skip to the next paragraph unless you like reading about bodily fluids) because the lump under my arm that I'd noticed that was alarmingly adjacent to a boob cancer scar almost two inches long thankfully turned out to be a sebaceous cyst (which is now an inch long but finally disappearing, yay). And because my boob discharge was alarmingly green after months of being strawish-clear. And because I have my first UTI in a very long while and it suuuuuuuucks. But finally, the Cipro is working because I'm back to strawish-clear boob ooze and starting to feel better while incredibly puky. I was quite pleased to hear from my cancer surgeon that (thanks to my photography) I'd documented the best case scenario for non-standard boob juicery, with it being green and coming out of multiple ducts (like 8 or 9 at the same time, this one time, which was freaky, and I know this because I was reading while sitting naked under a ceiling fan after a shower and noticed the dried evidence when I next saw myself in a mirror).

Oh, and I am apparently aging faster than I should, since my eyes are doing things that should be starting a few years from now, and I'm apparently in perimenopause now with all this gunk, so yay. I'm really flippin' old for 38. I'll be 39 in late August. And 40 next year. OMG 40. Next year. Hubby just turned 37. (Yes, in a row.) Last week. I'm old. Okay, happy thoughts needed stat so here's some nerd love.

In really happy news, I'm so pleased (and many many other adjectives) about season 3 of The Variants. (OMG dudes, they have a Wikipedia page! Someone should add Joe as a producer sometime. Just sayin'.) Hubby and I helped make season 3 happen via Kickstarter! I'm also excited about the upcoming Stella B. and the Busted League and really happy to see The Untitled Super Cool Nerd Show on air. Dallas totally rules the nerd landscape, you people. I'd go on about Dallas Comic Con and other stuff but nah. I'm off to play Sims 3 and calm my mind a little, since my brain is tired. The game I've been playing for the last month or so is in Hidden Springs, and the local unicorn had a habit of showing up at my sims' home until it got adopted, and one time when one sim was fishing, the other came by to hang out since the unicorn was there, and they both got blessed by the unicorn, and they were already engaged so they decided to have a private wedding, and so now I have two very happily married (and hot) lesbian sims with two dogs and a stray cat that adopted them plus the unicorn which was totally cool with joining the household. My Sims are honeyadventurooning in France right now. Gotta keep them away from that damn cat. I swear, that cat is so cute that they play with it instead of going to sleep or eating or whatever. Stupid cuteness.

You know, I'm not even going to bother reading over this and editing anything. 'Cos I'm Linsane, y'all.

Okay, I changed my mind and added a few links, and while proofreading my husband asked me if I was on a Mormon site.

Whaa?

Because he saw the flowers, and he thinks that Mormon websites are apparently full of flowers. Excuse me, *I* took that photo in the background (and he knows this and he knows I'm not Mormon), and it's all watery reflection of trees and non-blossoming lotus paddery so Not Full Of Flowers. I told him he was mean. Because I'm cranky. And need to be playing Sims 3 for 30 minutes before bedtime. And need to be taking my evening meds with a nom glass of Silk Dark Chocolate Almond Milk because screw Cipro, it's time for calcium. Mmm.... meds.

Also, please don't take that as a slam against Mormons. I've had Mormon friends since high school plus we have a Book of Mormon somewhere on one of our bookshelves (along with a Qur'an, the Jefferson Bible, the Bhagavad Gita, and other sacred scribblings), so don't start any shit. Thanks.