Existential Crisis

I took a little break from this blog.  Actually, I took a little break from all things BRCA related.  I hid all of the Facebook groups I belonged to, logged out of my @bloggingbrca twitter feed, and stopped reading blogs.  Why?  I was becoming kind of obsessed.  It was all I was thinking about.  And I had all this surgery for precisely the opposite reason – so I could stop worrying about all of this.

Part of it was an ego thing too.  I started reading some blogs of BRCA+ women who’ve been writing for years and years – some of the first people who went public online about their BRCA status and prophylactic mastectomies.  I saw all of their followers, comments, likes, their press releases and news interviews (although I should say, only about three people of my friends/family know about this blog, so I’m losing out on a lot of traffic right there – if only I’d let my mom in!).  I began to wonder if I really was adding anything new to this conversation, or has it been going on without me for a really long time.  What is my point here?  I was having an existential dilemma about blogging.  Kinda pathetic.  And then there was all of this news about whether DCIS is really cancer.  I started to feel really embarrassed – I have said I had breast cancer, when maybe I didn’t really.  I always mention it was only stage 0 (and I add that this is why mammograms are so important!) and that I had no treatment, so it was practically nothing.  But I started to feel displaced – survivor? previvor?  I’ve said I don’t like either of those terms and I don’t use either to describe myself.  But even if I wanted to claim one, I don’t know which one I am.

So I took a break from the whole thing.

Obviously, I’ve decided to come back though, and there are two main reasons.  The first is that I do want to help other people, and if any one person reads this and comes away with something useful, then I’ve done my job.  The second is purely selfish – it’s cathartic, and it helps me exercise my writing muscles.  Right now, I should be reading student papers and responding to them, or I should be doing research and writing about it.  But I’m not.  So I need to keep my muscles moving – my brain to my fingers to the screen.  And I do it publicly for the first reason I mentioned.  It’s kind of a cycle.

When I last wrote, about three weeks ago, I was headed to see my gynecologist and the surgeon who did my hysterectomy.  Both appointments were sort of deflating.  Dr. Balk said I could stay on the estrogen patch for a few years, and we’d keep evaluating.  She said I should get used to the idea of having mood swings.  As someone who’s been on antidepressants for almost 20 years now, that’s not something I really want to get used to.  I like the somewhat numbing feeling I get from my meds.  I like that I can have rational emotional reactions to things and not get hysterical.  So that upset me.  My appointment with Dr. Sukumvanich was even worse.  He basically just gave me a rather quick and far from friendly pelvic exam and said “see ya later.”  He answered my questions very cursorily – I asked him about all of the items listed on my pathology report and he said that none of them indicated cancer and that’s all he cares about.  Ok then.

In the meantime, I’ve started having a lot of sadness when looking down at my belly – my poor, tortured belly.  I have the hip to hip incision with its lumpy purplish scar tissue; three small scars from the hysterectomy instruments; a scar all around my belly button, which is now long and thin and seemingly bottomless instead of round the way it used to be; stretch marks from being overweight, carrying a baby, and having my whole abdomen stretched during the DIEP procedure; an estrogen patch; small squares of residue and dirt from where the previous estrogen patches were (nothing seems to remove this residue).  I just feel like my belly has become the center of everything.  My pants don’t stay up, my underwear digs in, and in the evening after I’ve been running around all day, I am sore like my stomach is being squeezed.  It’s sad.  I feel sad about it.

On top of that, I’ve been having this strange sensation of hot fluid running through my right breast.  It feels like there’s lava in there flowing back and forth from my breast to my armpit.  I emailed Dr Gimbel about it and he says it’s probably nerve regeneration.  It’s a really bizarre feeling that happens several times a day.

In good news – we moved into our house.  Yes, we finally own a house.   It’s been really nice, and we’re looking forward to fixing it up a bit.  Our son is thrilled to have his own toy room filled with all of his trains, and we are happy to have central air conditioning!

Too Soon for High Hopes?

I think I might have kicked Evil Crazy Bitch (ECB) to the curb!  Well, I didn’t do it.  The Vivelle Dot seems to be doing it.  In fact, I’m hesitant to even “say” this aloud, but I might feel even better than I did before this whole thing!  When I wrote yesterday, it had been about 18 hours on the patch.  By 24 hours, I felt like a new me.  Some of it was probably the adrenaline rush I get before teaching or giving a presentation at work, and then the endorphin rush I get when it goes well.  But by the time I got home from work last night, I felt pretty awesome.  I was in a good enough mood to return phone calls I’d been avoiding.  My mom said something frustrating on the phone, and I just ignored it.  My husband did two annoying things, and I just went on playing with our son.  The little guy and I ran around in circles on the grass barefoot, chasing each other, falling down on purpose, lots of tickling and unabashed toddler belly laughs – I think someone should have filmed it as a commercial for estrogen patches.

So, I don’t want to jinx myself, but I thought I should report that I do feel pretty good!

Today I will see the hormone specialist to check in with her.  And, I will also see the surgeon this afternoon.  I plan to ask him about that strange pathology report as well as some of my physical symptoms (uncomfortable twinges when goin’ #1 and unable to ‘push’ when goin’ #2).

I’m Literally Hysterical (and yes, I know what “literally” means)

There’s an epidemic, it seems, of people not understanding the words “literally,” “figuratively,” and “ironically.”

I know the difference, and I can tell you that I am LITERALLY HYSTERICAL!  It’s common knowledge (I think) that the word “hysteria” has its root in the word “hysterectomy” – hysteria was a word used back in the olden days to describe women who’d had babies or uterine problems and then had severe emotional reactions (like postpartum depression or menopause).  Some women did in fact go insane.  I mean, in the 18th century, they didn’t have things like estrogen patches or vaginal creams.  But they did have asylums.

So when I say that I’m literally hysterical – I am.  I am having a rather major emotional reaction to a disturbance in my uterus (its removal).  Really, the reaction is to the removal of my ovaries, but I wonder if 18th century “doctors” really differentiated between parts ‘down there.’  What I’m talking about is the type of reaction we often see on sitcoms – there’s a pregnant character, she’s concerned about her appearance (of course, thinking she looks fat, which she is, because she’s carrying a BABY for chrissake), someone compliments her on her shoes,  she bursts into tears, cue laugh track.

Only it doesn’t feel funny when you’re the crazy hormonal lady.  I spent most of yesterday rather weepy for no real reason (other than the apparent disappearance of estrogen in my body).  I teared up when leaving my son at school – it was his first day in a new class at preschool.  This was not a milestone like kindergarten or anything – just a new classroom at the same school he’s been going to for over a year.  He handled it much better than I did.  I read on Facebook that an actor from a TV show I watched committed suicide – burst into tears.  This is not something I would normally give a second thought to.  The real event happened at CVS.

I won’t get into too many details here because reliving it just annoys me.  Basically, my doctor called into CVS an estrogen patch to help me deal with this weepiness.  When I went to CVS to pick it up, they told me they didn’t have it in stock.  They’d have to order it – it would be at least 24 hours before they would have it.  And there it went – all of my hopes at some relief down the toilet.  I pretty much lost my mind – I mean loud sobbing – people in other aisles definitely heard.  And, while the clerk (the woman who rings up the prescriptions) offered me some tissues, and the other clerk (the one who checks the insurance information) called around to different pharmacies to see if they had it, the pharmacist himself did everything in his power to avoid even looking at me.  Eventually, one of the clerks suggested I call my doctor to see if there was anything similar she could prescribe that maybe the CVS did have in stock.  I did this while the pharmacist, from whom I was standing about two feet, continued to ignore me.  I became more and more hysterical throughout the process – it was his job to suggest an alternative, his job to call my doctor and get a different prescription – as a human, it would have been nice to ask me if I was ok, even though I suppose that’s not really his job as a pharmacist.  I did leave there with an estrogen patch, and I suppose that’s really the most important part of the story.  I put it on in the car in the CVS parking lot.

This is a situation that would probably not have bothered me at all had I not already been an emotional mess.  I would have just come back the next day and picked up my meds.  But I was sobbing like I just experienced a death of a loved one.  Eventually I did calm down, and I was able to go on with my day – do some errands, cook dinner, pick up my son at school.  I did begin crying a bit during his bed-time routine; just saying I loved him and missed him during the day made my eyes well up.

I can’t say I’m noticing any difference now that I’ve been wearing the patch for about 18 hours.  I had an absolutely horrible night of sleep – I had trouble falling asleep, I had trouble staying asleep,  I woke up twice screaming from nightmares, and by 5am I had a  migraine.  So I’ve felt a bit on edge this morning, but I’m guessing it’s from lack of sleep and not from lack of patch efficacy.  What I don’t understand is this – how do you know if the patch is causing  side effects, or if it’s the menopause causing  problems, and thus you actually need more estrogen?  Was my bad night of ‘sleep’ caused by the patch, caused by menopause, or caused by something else entirely?  I can tell this is going to be some trial and error, which makes me nervous.   I start back at work today (after summer break) and I cannot mess up at work – this year I will become a very public face at my university, and I don’t want that public face to be smeared with tears.

And, I don’t know how much of this my family can take.  My husband, I will say, has seemed to come around a bit.  While it didn’t seem that he was taking this very seriously, I think the last few days have shown him that I’m sort of a ticking time bomb.  Last night he was really good at trying to mediate some stressful situations with our son – when the poor kid bit his tongue during dinner and started to cry, I almost lost it too.  My husband jumped in so I could take a breath, and I was grateful for that.

What worries me the most though is my son.  So far, I’ve managed to take out any hysteria on grown-ups.  But I worry that if he’s crying or misbehaving or just being his toddler self, that I might freak out on him, even though in the two years of his life I’ve never raised my voice to him once.

My Other Personality

Today is three weeks since I had all of my reproductive organs removed, thus the end of my hormone production.

The last week has been a bit like having a split personality disorder.  There is the normal me who hangs out with family, reads, writes, goes places, generally enjoys life (although is pretty well medicated on anti-depressants and anti-anxiety meds; but they work, I feel, to make me the person I could be if I didn’t have a brain chemistry defect).  Then, there is evil crazy bitch (ECB).  ECB has reared her ugly head four times in the last week or so.

Episode 1:
Toddler won’t go to sleep.  Husband and I argue a bit over how to get him to sleep.  He finally gets to sleep.  Husband says to me something about not yelling at him (husband) while trying to get toddler to sleep.  ECB shows up, screams profanity at husband, scares husband into leaving room, texts husband not to ever come back to room.  Husband sleeps on couch.  ECB/I sob for about an hour, then toss and turn all night feeling simultaneously sympathetic and furious toward husband.  I wake up as myself and we have a completely normal morning.

Episode 2:
Husband perceives that I say something to him in a not nice tone.  Husband says, “That wasn’t really a nice tone to say that in.”  ECB appears, screams profanity at husband, scares husband into moving as far over to the other side of king size bed where he hides until we both fall asleep.

Episode 3:
Mother tells me I am talking too loud on my cell phone while in the car on the way to Whole Foods.  ECB begins to scream at mother about years of criticizing.  Father cuts in and tell ECB and mom to stop.  ECB/I sob behind sunglasses while walking through Whole Foods, avoiding mother and father.  Silence in car on the way home from Whole Foods.  ECB/I sob for another hour or so alone at home.  I come out of bedroom as myself later to cook for the FORCE picnic we head to that afternoon.

Episode 4:
Husband and I take son to playground.  I criticize husband’s parenting in a rather mild way.  Husband walks away from me and son, sits on bench, pouts, and gives me silent treatment.  I ask husband what’s wrong.  He continue silent treatment.  ECB tells son that we’re leaving the playground now, storms off to the car leaving husband to collect confused toddler, sobs the whole way home, continues to sob for a half hour alone in bedroom, gets in car and goes to Starbucks to eat/drink copious amounts of chocolate.  I return home as myself about an hour later.

Seeing a pattern?  None of these are things that would normally upset me.  I mean, I’d be annoyed that my mom criticized me or that my husband was giving me the silent treatment, but I’d deal with it, usually by talking it through, and then it would be over in minutes.  These are episodes that last at minimum two hours, with uncontrollable sobbing (during which I think, “What have I done?  Why did I do this to myself?   What if I’m like this from now on…. forever?”).  And then, after I get ECB out of my system, I return to my normal self.  At that point, I usually agonize a bit – do I need to apologize for ECB?  Is ECB really my fault?  

I have an appointment with the hormone/menopause specialist, Dr Balk, on Wednesday.  My mother insisted I need help sooner than that  (a conversation that necessitated all of my power to restrain ECB) and I did just talk to the nurse.  Dr. Balk doesn’t see patients until Wednesday, but the nurse will call her to see if she thinks there’s anything we could start now.  Both the nurse and I seemed to agree that waiting until Wednesday so that I can have a full conversation with Dr Balk directly would be better.

Also, this morning there was a slight pink tinge on the toilet paper I used after I peed.  I’m not expecting that to be anything of any importance since I was told spotting could be normal, and that’s not even really spotting.  But, in the spirit of recording what’s going on, there you have it.  Pink TP.

Hysterectomy Pathology

The night I returned home from the hospital, Dr Sukumvanich called to tell me my pathology was all clean – no cancer.  Great news!  Yesterday I got an email that the pathology had been uploaded to my online medical record.  Here’s what it says:

FINAL DIAGNOSIS: UTERUS, CERVIX, BILATERAL ADNEXA, TOTAL LAPAROSCOPIC HYSTERECTOMY AND BILATERAL SALPINGO-OOPHORECTOMY.
A. CHRONIC ENDOCERVICITIS.
B. PROLIFERATIVE ENDOMETRIUM.
C. UNREMARKABLE MYOMETRIUM.
D. BENIGN FALLOPIAN TUBES.
E. BENIGN OVARIES WITH MÜLLERIAN GLANDULAR INCLUSIONS, MULTIPLE FOLLICLE CYSTS, AND OVARIAN CORTICAL FIBROSIS.

There’s also mention of “adherent hemorrhagic adhesions” and “numerous subcortical, bilateral, cystic structures filled with hemorrhagic contents.”

This sounds a lot less than “clean” to me.  Maybe there’s no cancer, but there sure as heck was a lot else going on.   Of course I’ve googled all of these items, and even with scary names like those, most of them are rather normal parts of a monthly cycle.   Really the only one that sounds as if it’s any trouble is the first one – chronic endocervicitis.

As I’ve said, for the past year or so, I’ve suffered from chronic abdominal pain – almost like constant pms cramps.  So I wonder if any of this could be the cause.  But how could none of this shown up on a yearly exam or a pap?

Obviously, I’m going to ask the doctor about all of this when I see him on Wednesday.