“Intercostal brachial neuralgia” and proving things are not “in my head”

You’d think by this point (over 2 years later) in time my doctors would stop suggesting mental causes for physical aches and pains, but, sadly, that is just not the case. Left to “doctor” myself, then, I spend an average of 5 hours a week researching chronic pain, postmastectomy pain, nerve damage and “postmastectomy reconstruction sydrome” or PMRS, which is a new label that encompasses a world of complications that result from breast reconstructive surgery.

An article that I came across yesterday explains some of these phenomenon well, and gives a name to my mind-numbing itching/burning/pain on the right side of my body: intercostal brachial neuralgia. Are there treatment options? Nah, not really. Could it be cured? Not likely… but, at least it has a name. The article, “Relieving Pain and Other Symptoms after Breast Cancer Surgery” describes intercostal brachial neuralgia as a condition that develops after involvement of the intercostobrachial nerve [a nerve in the armpit], and can “be extremely painful with burning, tingling, and other unpleasant neuropathic sensations.” Me. To. A. T.

Imagine my surprise, however, when I read this paragraph: “How is postmastectomy reconstruction syndrome diagnosed? A rehabilitation physician [also called a physiatrist] with experience treating the condition can usually make a diagnosis by reviewing your medical history and performing a basic physical exam. Sometimes additional assessment, such as electromyography to detect abnormal nerve and muscle function, is needed. Imaging such as MRI of the cervical spine, brachial plexus, or shoulder is also helpful in certain situations.” I could have a formal diagnosis?! There are ways to confirm that these pain issues stem from my surgery?! There are people with EXPERIENCE involved?! Sign me up.

*searches the internet for a rehabilitation physician* 

BRCA Burnout, Blogging and Birth Control

blog_brb

You may have noticed (or you may not have, which won’t hurt my feelings in the slightest) that I have been on an extended blogging hiatus. I’m sad to admit it, but in addition to the complete mind-fuck that was DIY wedding planning, I’m not exaggerating when I say that I got burned out on BRCActivism – big time. I love my BRCA sisters SO much, but I just couldn’t handle the emotional commitment on top of the chronic pain, job stressors, wedding planning insanity AND blogging, so I quietly slipped into blogger hibernation mode. Don’t get me wrong – I’ve got tons to share, and I’ve actually written a few private posts that I will make public sometime soon (I mean, I’m practically legally obligated to share some wedding pictures with my followers, right? Check out our wedding photographer, because her stuff is the shit), but it was a necessary break that didn’t really have an end date until……….

@#*&! SCOTUS got me so riled up that I decided to come out of bloggy retirement, y’all!

To avoid offending anyone’s intelligence (I can’t promise I’m not going to offend your sensibilities, though, so proceed with caution), I’ll just link to the Scotusblog posts about the recent decision that pushed me over the edge:  Burwell v. Hobby Lobby Stores, Inc. Anyone who knows me probably immediately made a mental note to avoid me after hearing about this ruling. Seriously, hulk smash, SCOTUS.

This is a woman’s rights issue – fuck, this is a HUMAN rights issue. This is a religious freedom issue. This is a separation of church and state issue. This is, well, this is fucking insane. Laci Green put it best:

I read a lot of really amazing, passionate responses to this abomination of a ruling on social media … but I also read a lot of crap. A lot of “I’m playing devil’s advocate here” comments and “freedom of religion, yee haw!” posts (don’t get me started on why THAT is crap… read this guys take), and a lot of people missing the point. One of them, a Facebook friend, posted this status today:

What if everyone who is spending time on FB posting, sharing, bitching and complaining about yesterday’s Supreme Court ruling spent the same amount of time advocating for Childhood Cancer???? Contact your Fed Rep and tell them to appropriate $ towards research for childhood cancers. Reach out to a family in your community to see how you can help. Help our future generations or else birth control won’t even be an issue to discuss.

My initial reaction was eye-rolling and exasperation. Railing against SCOTUS shouldn’t imply that we care any less about Childhood Cancer. They have nothing to do with one another! Then I thought about it for a minute, and (of course) my BRCA brain zeroed in on the “Big C” in her statement. Cancer. Oh. My. God. Contraceptives. Cancer. Why hadn’t I thought of that implication before?! Here I was worried about baby-making and choices and women’s rights – but birth control is a LIFESAVING measure for women like me. This whole issue is so much bigger than sex, people.

Ovarian cancer kills people. That’s a known fact, and mutants like me quake in fear at the mere mention at OC – but, what can we do to protect ourselves against it? Uh… not a whole lot, aside from TAKING BIRTH CONTROL. Birth control has been shown to greatly reduce the risk of Ovarian Cancer, and as it turns out, the longer an individual takes it, the lower their risk! It’s so important to women with a risk of OC (not just BRCA mutants, either!) that our gynecologists actively recommend that we use it, despite the slight increase to our risk for breast cancer! This benefit is often thought to be limited to birth control pills, but studies show that ALL forms of contraception (including vasectomy?!) help to reduce the risk of Ovarian Cancer development. Hobby Lobby is so focused on preventing (imaginary) abortifacients from getting in the hands of women who (clearly) can’t be responsible enough to make a decision themselves that they are actively preventing women from protecting themselves from the “Big C”?

heart

Snark aside, cancer risk reduction is just one of many non-intercourse based reasons that birth control is an essential *medication* for many women. Decreases in chronic acne, migraines, and severe cramps, as well as regulation of menstrual cycles and other hormone levels are seen in patients that utilize birth control. Polycystic Ovary Syndrome, a painful condition that plagues many young women, is commonly treated with hormonal birth control, among other hormone treatments.

Other posts have pointed out the multifaceted use of birth control in the past few days, so I’m not rattling any new cages here, but the potential harm to women is palpable and will be documented. I like to talk about cancer (what can I say? it’s my wheelhouse), and I felt like kicking and screaming, so there you have it. There are SO, SO, SO, SO many more cans of worms opened by this ruling and I just picked one tiny piece, but any excuse to make a fractious image like the one above, eh?

 

The more things change, the more they stay the same…

I haven’t posted publicly for about a year (not-so-coincidentally, that was about the amount of time it took to plan and have out wedding). Naturally, lot of things are different now! I have a new husband, a new last name (albeit not yet “officially”) and we will (hopefully soon) be moving into a new rental property, with the goal of finding a house to settle down in in the next few years.

I passed the two-year anniversary of my mastectomy quietly, and began seeing an integrative medicine doctor for help with my food allergies and overall health. I removed myself from all prescription medications and began taking supplements to help heal my immune system and my “leaky gut”. I tested positive for a boatload more mutations, all of which are indicative of malabsorption of vitamins, and have been working on figuring out how to compensate for those losses directly. It has helped, but only minimally, and has been really hard to stick to a grain-free sugar-free diet since the wedding cake took me so far off course!

Still, with all those changes, I am in pain. Constantly. Sometimes so much so that I am depressed for my own life and the life of my new (wonderful, supportive) husband. Will I ever be able to have kids? Will I ever be able to walk the dog without a nap afterwards? Will I ever feel “normal” after eating again? I’m hanging in there, and I’m so, so grateful for everything that I have and all the things that are in store for us as a newly-married couple, but I do wonder how much I will be able to enjoy.

Pain is pain is pain…

…and it’s never going away? What?

I’m facing a dilemma of sorts right now – I have hit what my new pain doctor has not-so-affectionately termed “the black hole of pain”. Nothing hurts more than anything else, so I can’t just point and say “it hurts HERE” (unless I’m pointing, well, everywhere), but everything hurts pretty freaking badly. It was easy when I first started seeing him because I’m right-handed, and the brunt of my pain was on my right side, so I had a goal. But, after four cortisone shots to the areas surrounding my “drain hole” scar, my range of motion has increased and the sharp pains have lessened, putting them on the same pain level with the rest of me, so, now I’m just experiencing a sort of general malaise, and it’s driving me all but mad…

PAIN

Until two weeks ago, I WAS chewing sodium naproxen and ibuprofen like they were candy, but had stopped taking them in an attempt to get my bearings and find out what my *actual*, un-medicated pain level was. In fact, I was officially off all the meds I was taking (except an over-the-counter antihistamine for my allergies), until about 30 minutes ago, when I had to face facts. Really tough, hard-to-hear facts, and ones that I’m pretty sure Dr. D didn’t like sharing.

You see, the reason I’ve really bonded with Dr. D is because he’s empathized with my desire not to be on medication, and he’s been super patient in letting me try alternative treatments so that I can avoid it (plus, I’ve pretty much run the pharmaceutical gamut). So, today, when he examined me and found my muscles to be tight and spasm-y (again), he looked sad when he said “there isn’t much more we can do, aside from medications”. He knows I hate the pillz. He knows they don’t work well for me. He even knows that I can’t lose weight when I take them… but he was definitely right when he said “you can’t live like this”.

Before the appointment, he had gone through my charts from all the other doctors of doom and noticed that I never tried Celebrex (an NSAID, and fairly benign compared to all the other drugs I’ve tried, honestly), so he handed me a box full of free samples. I explained that the reason I didn’t try it during my “I’ll try anything if it will give me my life back” phase was because my insurance had denied coverage of a previous prescription by the first pain doctor, but he reassured me that if I felt even *remotely* better that he would fight with them and make them cover it… so… drugs. Again. Sigh.

I gave in easily: I’m so tired all the time, and if I don’t have a migraine, I have nerve pain or unbearable itching. Sure, my nerves might still be regenerating (I actually think that’s likely, given my increase in symptoms of late), but I can barely stand lying down some nights, and other times I can’t bear to stand up. There’s no winning with this ghost diagnosis, because you can’t treat something that you can’t see… so, I medicate.

My only other option is surgery, and I just can’t imagine how much I would have to work to amass the kind of leave needed to have it again. The leave I’ve saved since the last surgery is going towards a week’s vacation in Lac du Flambeau, Wisconsin to see Jason’s family… even if I did need surgery I’d never cancel this trip, because after all the sacrifices he’s made for me, the LEAST I can do is endure some mosquito bites so that he can see his brothers and parents and go fishing a few times. Still, I do find myself longing for more of a “recovery time”, and I daydream about having surgery to allow Dr. B to fix the implant on the left (which has an abominably long recovery period standard) – or even surgery to have the implants removed altogether. I just want my life back.

But, since my “real talk” with Dr. D this morning, I’ve been feeling pretty depressed. When he leveled with me, saying that it would be extremely hard to lose weight right now, and that exercise is just aggravating the inflammation, I wanted to bang my head on the wall. No winning will be had today … unless the Celebrex works. Then we might be having a different conversation in my next visit…

The time my “cat vet” almost killed my cat. For no good reason.

My cat is not well-behaved. He’s not well-behaved at home, on Prozac, so let’s just paint a picture of what he’s like at the vet:

Imagine, friends, a ball of fur/teeth/claws/psychosis zipping from corner to corner and making the most (admittedly comical, although they weren’t at the time!) obnoxiously loud screaming noises – NOT a happy kitty. Unfortunately, he was a kitty that needed his shots… but if I had known what the cost of getting them would be, I would have never taken him there in the first place.

Unfortunately, after a few minutes of trying, and complete refusal of my insistence that I could handle him just fine (and my willingness to sign a release waiving my right to keep my limbs…), the vet gave up and informed me that he would have to be sedated (“boxed”) in order for her to get a blood sample (because they told me he was underweight – which he absolutely was not), give him his shots and clip his nails. Since he lets me clip his nails like he’s getting a manicure, I was already pretty perturbed that they thought this was necessary, but I wanted him to get a good exam, so I relented.

Apparently, it’s common practice to sedate “difficult” cats by shoving them into a Tupperware container and gassing them until they pass out – do they monitor heart rate? Nope. Do they check vitals to see the affect anesthesia might have on them? Nope. They label them as troublemakers, shove them in a box, and turn on the gas. That vet = Hitler.

Needless to say, I was a wreck, and when she called me back to see him, I was ecstatic. It was then that I saw my cat’s almost lifeless body laying on the table. “He’ll wake up in a second,” she told me. 10 Second went by. 20. 30. Then she started shaking my limp cat, and talking through gritted teeth at him, saying “you’re scaring your Mommy, kitty. Wake up….” and looking slightly concerned. She then shoved him in his cat carrier so hard that his head hit the back of the box and handed him to a vet tech to “prepare him to go home” – all the while chastising Jason and I for rescuing a dog that doesn’t really get along with the cats. It was pretty much my worst nightmare, but it didn’t even end here!

Eventually, he DID wake up, but he threw up a bunch of times, he couldn’t walk, he tried to jump on the couch but fell … it was a mess. I called the cat vet’s office and asked if there was anything I could give him to stop the vomiting, and they said I had to bring him back in… imagine my surprise when he acted like a psychopath during the return visit – can you blame him? Anyway, after all that, the vet didn’t even make time to see him, and another vet, after attempting to give him a shot for his nausea, settled on giving him OVER THE COUNTER pepcid. Yes, exactly what I asked for over the phone. I hate these people, and will not be going back.

Thankfully, after a day of disorientation, lethargy and nausea, Fionn is on the mend, and will soon return to terrorizing J, his brother, and his new favorite thing to torment: Otto.

Pain Doctor # 1837342

I love him.

Don’t get me wrong, I think he’ll be just as useless as the rest of them, but he listens. He thinks before he speaks. He even *gasp* believes my stories without having to double-check them against every doctor I’ve ever seen (although this may have to do with my BS meeting with him before my appointment – I imagine she gave him a healthy dose of “don’t fuck with her” before she bid him adieu).

He gave me back my valium, told me that my previous doctors were assholes (a fact of which I’m well aware, but it’s always nice to have angry allies), and then lo and behold: my boobs gave a performance!

Right there in the room, my chest spasm-ed in a most excellent demonstration of the hell that I’ve been through (see video below for an older recording, but a similar performance), and his eyes almost bugged out of his head. He called doctors and nurses alike in to see them do their evil little dance, and damn it if I didn’t walk out of there with tons of drugs, but more importantly: sympathy. I really feel as though I deserve some sympathy.

Jason waited in the car while I was in my appointment, and when I climbed back in, I burst into tears. He looked sad, asking “another one?” (assuming, of course, that it was a bad appointment), but I just shrugged and sniffled while he hugged me. Sometimes I think hope is the worst thing a doctor can give to a patient like me, but maybe this time it will get me through…

How Otto came home

Dana Kollmann – former professor, fellow deviant (in a legal, only slightly unhealthy way), and troublemaker. She was the beginning of this adventure, and we will forever be indebted to her for bringing us this goofy, wonderful ball of joy. It all began when I saw this post on her Facebook wall:

Dana's FB Post About Otto

The Facebook post that started it all…

After seeing Dana’s post, I emailed J, who was, of course, exceedingly practical in saying: “he’s too big and our house is too small”. I continued pleading with him though, because I had a very strange strong GUT instinct that told me that we needed this dog as much as he probably needed us. We were each going through a lot of personal struggles, and settling into a fairly unhealthy/sedentary lifestyle, so a dog was one solution we discussed to get us moving (and J had wanted a dog badly for as long as I had known him). I reminded him of this, and he relented, allowing me to email the woman who posted the initial plea. Below is the email exchange with her:

Emails About Otto

The initial email exchange.

The following day, much to our surprise, our landlord agreed to let us add a dog to our already very full house (for a VERY reasonable pet fee of $20/month) – we were almost positive that he would not agree because he had seemed so adamantly opposed to dog ownership when we signed the initial lease, but very thankful that we were wrong! I enthusiastically updated Dana, and thanked her for sharing the post.

Thanking Dana

Thanking Dana

On Saturday, April 20th, we drove to Middle River, MD to meet Otto. We met Missy and her husband in the parking lot of McDonalds down the street from Otto’s original owners’ house. From there, we followed them to the house, all the while feeling both apprehensive and excited to see this big boy.

When we arrived, the two men that had been “taking care” of Otto brought out a shaggy, skinny, sad-looking dog and I thought my heart was going to burst into pieces – he walked right up to me, licked my hand, then continued past me to Jason, on whom he rested his head, and leaned his (obviously) weary body. The men loaded him into their SUV and asked us to follow them to a local park so we could “see him out in the open” (we now think that this was an attempt to hide Otto’s living conditions from us so that we would not report them). Upon reaching the field, they unloaded him and we sat under a pavilion and talked to them about Otto’s story – most of which we have since determined was one giant lie.

We were told that he was a 5-year-old purebred Shiloh Shepherd, a rare breed thought to be a cross between large German Shepherds and possibly a Malamute line. They explained that he had undergone K-9 police dog training, but unlike his father and brother, had not been selected to be a police dog because he “lacked a prey drive” (these people were idiots – just ask my poor cats about his ‘prey drive’!). They went on to say that their father had retired from the police force after suffering from complications related to Lyme disease, and since both the father and brother had been killed in the line of duty (we are still looking into whether this part of the story is true), they had no desire to keep Otto as a pet – they only wanted working dogs.

Meanwhile, while they were telling us about him, Otto was desperately searching for water on the ground (he was clearly extremely dehydrated), climbing on the picnic table (apparently his go-to sleeping spot in his “habitat” in their back yard), and endearing himself to each of us individually in various different ways. By the time the massive impending thunderstorm hit, both J and I were already telepathically communicating (mostly via pleading looks at each other and Missy/her husband), and we agreed with the two men to come back and get him the next day. After they left, Missy and her husband climbed into our car and we finalized the plans to bring him home with us. It was everything J could do not to follow them that very night and beat them to a bloody pulp – but Missy and I both felt that it was best not to antagonize them until we had him in our possession.

After we left them, I realized that I didn’t take any pictures, so I quickly sent a text to Missy, who replied with (the above) photos. We continued to text back and forth, and discussed how to get his vet records – we were very anxious to remove him from this terrible situation!

Yesterday, Sunday, April 21st, we brought Otto home. He was neither afraid, nor even remotely hesitant to get into the back of our CRV, and perhaps I am making him a bit anthropomorphous, but to me, he looked relieved. Of course the “crate” they said they would provide was rusty and disgusting, so we met my mother at the Catonsville PetsMart to buy him a new crate. He had a very unpleasant accident in one of the aisles after eating a can of dog food after going probably several days without any real food or water, but my Mom and J helped the employees clean it up, and we got him some new things and packed him up to go home.

Otto Riding Home

Otto Riding Home

Today, we took him to the vet, where we learned that he only weighs 83lbs (grossly underweight – according to breed standard, he should be at least 120lbs!), and that he has a skin infection, fleas, worms and probably other issues as well. He did, however, test negative for heart-worm, so we are saying prayers to the puppy powers that be that he will be able to thrive given some TLC (and lots of expensive tests and antibiotics). He’s also still “intact”, so we’ll likely need to get him neutered once he’s healthy.

Welcome home, Otto!

Kickin’ ass and running miles … back in the swing!

Repost from Facebook:

Just finished Couch to 5K week 1 run 1 with Get Running. Distance: 2 MILES!

I haven’t run in exactly 1 year and 21 days, I have gained 20 lbs and I’ve spent a looong time on my ass on the couch…and yet, I just started at a pace that I had only reached towards the end of the program last year. The human body is an amazing thing. I don’t think I’ve been so proud to be in pain in my entire life.

 

Update (6/25/13): Aaaand…. haven’t run since. Doh.

1 year BS visit

I wasn’t excited about this visit – hell, I almost didn’t go, but I was unprepared for what transpired.

The first thing that happened was a lot of unnecessary fussing over my blood pressure. I hate doctors, and I am in constant pain…why do you think my blood pressure is elevated?! When I finally convinced them that this wasn’t the end of the world, they took me in a treatment room and there I waited. And waited. And waited.

Finally, in came my breast surgeon, who I had not even spoken to since the nasty email exchange (to be posted in Terri’s “Letters to Doctors” book), and the look of shame was written all over her face. Apparently, she had been following up, just not with me. The first words out of her mouth were a jumble of apologies and statements of disbelief, but it seems that she believes me now. It only took 14 months.

We discussed all 35,000 treatments and supplements and drugs and therapies I had tried and she finally handed me a piece of paper with Dr. Denney’s name and number on it. “One last pain doctor to try?” she offered. I took it, because I’m not one to look a gift horse in the mouth. We discussed options and then she dropped the bomb.

“Why haven’t we done a breast MRI?”

*beat of complete silence*

“Have you considered having then removed?”

I actually did a dramatic teen eye-roll here (a la the divine Ms. Tina Fey) and heaved a great big sigh as I answered her question with a quote from a previous phone conversation: “I wouldn’t know what kind of MRI to order – you need to see a specialist.” At this point she got that I was irritated and apologized again, explaining that “she’s never had a patient like me before” and “she’s been reading everything she can find for months”. She blinked a few time while I just side-eyed her in my paper gown, and then repeated her question:

“Have you considered having them removed?”

Yes, I told her, and many times I’ve come VERY close to removing them myself. I explained about my new-ish plastic surgeon, and re-iterated that if the other surgeon’s name was even mentioned, I’d strangle her with my hospital gown. She looked vaguely afraid of me by the end of the appointment, but rightly so. She should be afraid. Very. Afraid.

But, I did leave the appointment with a pain doc appt (since they keep ditching me) and an MRI scheduled. It seems that the universe really needs a kick in the ass to jump start it, lately…

UPDATE: My MRI has been cancelled 3x. Still haven’t had one. The medical community’s un-ending bullshit NEVER fails to surprise me.

Lamictal

Lamictal is a drug that no one should ever try. Not for the disorders for which it is intended, nor for the off-label uses that are absolutely absurd. My psychiatrist made it sound easy: “it’s a mood stabilizer,” she said! That sounds pleasant enough, I thought, but i wondered why she found my mood so unstable.
As it turns out, the last of the original doctors had finally turned to the dark side: the pain was now officially “in my head”. Somehow I developed a mood disorder from the time of my surgery until now – I’ll admit, I had been testy, tired and depressed from the pain, but wouldn’t everyone?
Still, sadly, I questioned myself and began to doubt reality. A mood disorder had a treatment. A mood disorder could be controlled. Lamictal could be my saving grace! Except it wasn’t – and it could have ended up killing me.
Possible Side Effects:
Call your doctor at once if you have any of these other serious side effects:

  • the first sign of any skin rash, no matter how mild;
  • fever, swollen glands, body aches, flu symptoms, headache, neck stiffness, increased sensitivity to light;
  • easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
  • upper stomach pain, loss of appetite, dark urine, jaundice (yellowing of the skin or eyes);
  • chest pain, irregular heart rhythm, feeling short of breath;
  • confusion, nausea and vomiting, swelling, rapid weight gain, urinating less than usual or not at all;
  • pale skin, feeling light-headed or short of breath, rapid heart rate, trouble concentrating; or
  • increased seizures or worsening of your bipolar disorder.

Less serious side effects of lamotrigine may include:

  • tremors, dizziness, tired feeling;
  • blurred vision, double vision;
  • loss of coordination;
  • dry mouth, mild nausea, stomach pain, upset stomach;
  • changes in your menstrual periods;
    back pain;
  • sleep problems (insomnia); or
    runny nose, sore throat.
  • *This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects.

…Ask me how many I had. Go ahead. Ask me! Yes, friends, you guessed it – almost all of them.
Weeks one-three: double vision, sore throat, swollen lymph nodes, intermittent fever/nausea, headache (but let’s be honest, everything gives me a headache) and ACNE. I looked like a hormonal teenager (and felt like one).
Doctor’s visit:
Me: My throat is so sore I can’t swallow – is this related?
Doc: Nope.
Me: I can’t see my computer screens at work because my vision is so blurry. Is this related?
Doc: Nope.
On it went, until week 7, when, at 125mg, “the rash” fears started. This is when I started researching…turns out, you can *die* from a rash reaction, which turns into “Steven’s Johnson’s Syndrome” (i.e. your skin falls off). I told the Doc that I was fearful of all my reactions, and she told me to quit…cold turkey. Awesome. Side effects+withdrawal= a special, special two weeks.
She put me on Effexor, another “special” med to replace this, as I refused outright any other off-label use drugs, and lithium wasn’t even an option in my mind! So, hopefully this won’t make me crazy, too!

Happy One Year Boobie-versary to Me!

Somehow I thought this moment would be exhilarating – like getting off of a roller-coaster and looking at your partner and saying “whew! wild ride!”… but, sadly, I’m still on the kiddie rides, whining “go faster, go faster!”

This is not the celebratory day that I wanted it to be, but I have managed a few accomplishments in this less-than-pleasant year:

  • I’m coping with the pain without narcotics, and I’m not discussing the pain anymore (with anyone except my doctors, my mother and J – if he really wants to know) – mostly, I’m just excusing myself and breathing through it.
  • I’ve learned a HELL of a lot about boobs. Like, a lot. Way more than I ever thought I would have.
  • I’ve managed to remain attached to the most wonderful man in the world. If I haven’t chased him away yet, I think he’s in it for the long haul.
  • I’ve tried: injections, narcotics, topical painkillers, pain patches, special diets, herbs, essential oils, chiropracty (is that a word?), physical therapy, every exercise I’ve ever found in any mastectomy reconstruction book, meditation, screaming, stomping, yelling … and none of it has worked.

Here is what I wrote on Facebook – the very first time I acknowledged (openly) my surgery, my experience and spoke honestly about it with people who may not have known:

327

The responses were surprised, supportive, caring and thoughtful. It was a very heavy day, but I managed to find some bright spots (and let’s face it – turning your life into a fairy tale is what everyone does when things suck, right?). Here is what my Facebook friends said:

1

2

No matter how bad things seem, someone always has it worse. 

I need that tattooed backwards on my forehead, I think, although I am beginning to get to a place where I can stop, take a breath and remind myself to be grateful for the life that I have.

Approaching the 1-year-boobieversary… with a whole new set of problems.

I anxiously approach the 1-year anniversary of my mastectomy with the hope that some magic switch inside my body will say “okay, you’ve had enough” and the pain will be gone. Sadly, not only do I know that won’t be true, but that I will potentially have scarier things to worry about…

Let me catch you up:
1. The Palliative Care doctor: Nice, but didn’t offer any solutions except taking amitryptaline (a different antidepressant) and stopping the cymbalta (which I got from my PCP, if I didn’t explain that before). When I went back for a follow-up and said I felt the same, however, he said there wasn’t anything else he could think of — according to my pain chart, I had literally tried everything. End of story: Dumped again.

2. The psychiatrist: saw her shortly after above-said dumping, and she finally went to the dark side. “If all these clinicians think it’s in your head, then maybe we need to treat that first”. I was devastated, as she and my PCP were the only ones who had remained who didn’t think I was crazy. So, end of story, I’m on a LOT of crazy people meds:

pills

  • Lamictal- normally used for bipolar disorder…and doesn’t play nice with my birth control (at 50mg now, but will slowly increase to 100mg!)
  • Wellbutrin- antidepressant that’s supposed to help my sex drive …sadly, it doesn’t work. My poor boyfriend.
  • Effexor- ANOTHER antidepressant…(175mg-just DOUBLED my dose last week)
  • Adderrall XR- the only way I can stay awake any more(?mg)
  • Klonapin- the only reason I can sleep at night(3mg per day)
  • Neurontin- the only legit pain component of this regimen (1200mg/day)
  • And a whole bunch of supplements, teas, extracts, etc. aimed at keeping these side-effect-heavy drugs from destroying me (also, not really working)

I see her again next week, so here’s hoping she believes that I am still in exactly the same amount of pain as I was before. Jason says they make me “easier to be around”, so I guess I was a little mad at the world there for a bit…but I shouldn’t need THIS MANY pills to calm my anxiety, should I?

3. The gyno-onco: After having *excessive* bleeding in the middle of my cycle, and the worst cramps of my life, I went for an exam and the words I never ever wanted to hear came out of her mouth: “you have mass on your right ovary”. From then it was a flurry of getting a pelvic/transvag US, getting my CA-125 done (still haven’t bc I couldn’t find a lab to do it within my network) and then having 4 different people reading it (including the radiologist)!

Nurse 1: “It’s normal”.
My response: “What the fuck does that mean? How does that help me explain bleeding, pain and all my other symptoms?”
Nurse 1:”You have bleeding? And pain? You’re BRCA2+? Let me have the nurse practitioner look at it again.”
My response: “Why don’t you people ever talk to one another?!”
Nurse 1: (silence) “We’ll call you back.”

Nurse 2:”The nurse practitioner said it looks normal, of course, you do have a mass on your right ovary.”
My Response: “What the fuckity fuck?! Why wasn’t that said before? You can’t tell if it’s normal from looking at an US? What about the bleeding?!”
Nurse 2:”The nurse practitioner says to take Advil and two birth control pills for three days.”
My response: “Let me speak with this “Nurse Practitioner”
Nurse 2: “We’ll call you back.”

NP: “It’s very small and they usually go away on their own.”
My response: “So small that the doctor could feel it, huh?”
NP: “Well, she is a very good doctor.”
My response: “I know, that’s why I pay to see her. I would like to talk to HER. I have very specific needs, of which she is aware, and I do not wish to gamble on my life. No more speculation, just have her call me ASAP.”
NP: “We’ll have her call you when she gets in on Thursday.”

[Today]
Nurse 1: “The doctor has looked at your US and wants to see you as soon as possible.”
My Response: (In my head, I said NO DUH…) “Please schedule me for her first available”

I love nurses, and I admire nurse practitioners, but if I’m going to a specialist, I don’t need everyone and their brother speculating. Of course she wants to see me. Of course she knows I’m bleeding and in pain. Of course she factored these things in when examining a “normal” US of a 30-year-old female. Ugh.

So, that leaves me with just over a week until my boobieversary, with a possible abdominal surgery to biopsy it looming on the horizon. There goes the leave I’ve been saving for vacation…womp womp.

Médaille miraculeuse, protège-moi.

I have 3 draft posts that should come before today, but my OCD seems to have left me momentarily.

J quit smoking on Saturday, and I am over the moon about it…. but I am really struggling to help him get over his withdrawal. He’s mean and tired and grumpy (all legit, and to be expected), but ever since he admitted that he doesn’t want to tell me when something’s wrong with him because what I’m going through is inevitably worse (which is sad, and I don’t want him to feel like that) I’ve tried to pretend I’m okay anytime he’s been feeling ill.

Yesterday, though, I totally overdid it and I feel like crawling under my desk and dying. I barely have the strength to pick up my arms, let alone use them in any functional way. I just want to scream “OOOOOOOOOOOOOUUUUUUUUUUUUUUUCCCCCCCCCCCCCCCCCCHHHHHHHHHHHHHHHHHHHH” but instead, I will continue (quietly) to do the dishes until my arm is numb, and chop vegetables until I can’t hold my arms above the counter anymore. I know it sucks for him, so I will say nothing to him… but to you guys, I say: O.U.C.H. Only three more days until I see my “palliative care” doctor (another post forthcoming) and find out if he can diagnose me as RSD.

As for J, I am so proud of him – quitting cold turkey is very, very hard, but he’s so damn stubborn, I know he’ll be able to do it. If he can quit, then maybe we really will be able to grow old together – me with no boobs, and him with clean lungs.

Signed,

Exhausted, Hurty Puppy

No more surgery.

Finally saw Dr. B this morning, and he agreed with my subconscious: further trauma to my body seems like

  • unnecessary pain
  • could result in further issues
  • may not have any positive benefits whatsoever
  • could insight infection

So, Dali boob is here to stay. BUT, as I was just saying to my mother (about all my doctor dumpers), Dr. B did the “good doctor” thing: he gave me a referral to another pain specialist, and also gave us two names of nerve surgeons (one in Baltimore at Union Memorial – who pioneered a lot of nerve surgeries – and his protegee at Georgetown) who he assured us were top notch.

The big relief was that right now, there’s nothing “wrong” (meaning the implant being out of pocket is not going to hurt me), and my right implant has not capsulized as much as I thought (although the scar tissue is much worse).

So… same ol’ same ol’ for right now. Time to call the new pain doctor and see what he/she says (the name “Loren” threw me for a loop!). Fingers crossed for the next steps forward.