brca bullshit · pain management

MRI Results…and getting dumped (by my doctor)

My Mom went with me to my MRI so that J could play softball (his only outlet, and dude time – I’d never ask him to miss it, even though he offered). My Mom is amazing, in case I haven’t mentioned it…she (and J, of course) is the reason I haven’t given up on myself or my journey to health. After driving from Baltimore and sitting through my long MRIs, she then took J and I to the Chipotle and wouldn’t even let us pay. She’s the best, seriously.

The MRI itself was miserable-over an hour in a dark metal tube-but they didn’t want contrast, and the tech was remarkably sweet for 4pm on a Sunday, so it wasn’t an entirely negative experience. I was praying that they’d see something – that they’d find the answer in these MRIs I had requested so long ago. Sigh.

I was patient, and waited until Tuesday morning to call (and then again a few more times for good measure) and some random nurse (not even the PA with whom I’ve been working!) calls me to tell me that they didn’t find anything. No one ever finds anything. I asked if there were any other ideas, or if I could consult with anyone else, and the nurse basically said that there wasn’t anything else She could do for me…

I got dumped by my pain doctor.

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brca bullshit

Are all doctors deaf?

I have about 4 drafts that I haven’t posted, so bear with me as I probably will back-date a few of them in the coming days, but I had to post about this because it’s like the idiocy has come full circle:

Directly after my surgery (almost EIGHT months ago, I might add), I began seeing Dr. C for pain management. In our first visit, I asked if he could refer me for an MRI, to which he responded “nah, you don’t need an MRI”. After months of costly medications, physical therapy, trigger point injections, chiropractor visits, and even dietary restrictions… I go to him in what I would consider excruciating pain (comparable to month 3) and he acts confused as to what’s going on. I tell him my symptoms came back out of nowhere and we discuss options and now what am I getting on Sunday? An MRI. 

It’s frustrating for two reasons: 1) This might have saved seven and a half months of agony, had he just humored me in the first place (even if it doesn’t end up showing anything) and 2) He has my pain symptoms – the SAME pain symptoms I’ve had since the drains were pulled – listed as “new symptoms”. I just want to scream when I look at these orders, because nothing has changed, nothing has helped, and damn it, I am TIRED. I am SORE. My brain is in a FOG (which isn’t helping at work right now!)… throwing more medication at me is no longer the answer. I just want to curl up and die every day when I get home – that is NOT acceptable any longer.

What do I want for my 30th birthday which is just a little over 2 months away? I want this either solved, or I want these puppies OUT. Whatever it takes – I want my life back.

Next update (that’s not back-dated) scheduled for after I hear about my MRI results (unless something juicy happens in the meantime). Dr C’s got some ‘splainin’ to do.

brca bullshit · pain management

Cymbalta

I have a sinus infection. My PCP felt sure enough about it that he put me on a 2week course of antibiotics, although I suspect he did it just to shut me up.

In the course of our conversation, we talked about my pain and the difficulties I’m having and he recommended Cymbalta. I was hesitant, because after getting off of Pristiq, I didn’t want to go on another SSRI that would make me feel like dying if I missed a dose. Also it’s hella expensive…as all good drugs are.
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Eventually, after weighing the pros and cons of it, I decided to take it, because I would do ANYTHING to feel better…no matter how strong a withdrawal it might risk. I asked him how much it would cost, and he told me not to worry, then handed me a grocery bag full of samples – at least 3 mos worth! I felt very lucky, because even though I had to walk almost a half a mile home from the office, it was nice to know that at least one doctor understood my situation and was doing what he could to ease the financial burden. I wish all doctors were like him…

Here goes nothing!

brca bullshit

New doctor, new style, new outcome?

I saw Dr W on a whim. They could fit me in today and I would have what they called an “initial consult”. I had always been afraid of Chiropractors, but they were covered under my insurance, and at this point, I’ll pretty much try anything to relieve the pain without painkillers.

After I started seeing him, I felt positive, but not any better. The massage portion was necessary (albeit excruciating), but laying on my stomach for that long was very painful and put a lot of pressure on my already frazzled nerves.

I stuck with it until last week – despite having to run to the bus, take time off of work, *rent a car* one day… But last week my pain skyrocketed again after a particularly rigorous massage involving my jaw. Pain in my boobs is one thing, but pain in my jaw is absolutely NOT bearable.

It is at this point that I have said goodbye to the chiropractor, and once again reached out to my pain doctor for help. His PA wants me to come in for “medication re-evaluation” and more trigger point shots, but where it hurts is where they’re fearful of injecting because of the implants. Again, I feel sad that I had reconstruction at all.

Nothing new except my wonderful boyfriend’s extremely stressful job…now neither of us have the energy to cook/clean/do laundry/etc. We have become a pile of lazy, whiny mush…

brca bullshit

The ass-kicking the ocean gave me.

My wonderful Aunt and Uncle lent us their beach house for the weekend, and we decided to invite my cousin and her husband (who got J the interview for the new job he just got!) and my parents.

Now, let me remind you that I am a pale Irish lass and am not terribly fond of the sun (it gives you things like cancer and whatnot…), so J and I only planned one beach day, and weren’t even sure we were going to wear our suits. Still, the waves were rough and heavy just like I love them, and the dolphins were everywhere showing off with their flips and turns, so after making a rather expensive run to Sunsations, we decided to go play in the ocean.

Facts you need to know about me: I am an extremely strong swimmer. I swam in the same division as Michael Phelps as a kid (even if he was/is the biggest douchebag alive) and I even swam club team in college until the pool closed on campus. I was a lifeguard, for goodness sakes!

So, when I saw the need to dive under a particularly menacing wave, I instinctually threw my hands up and sprang forward… but my body didn’t work the way it was supposed to. I couldn’t propel myself with my arms because I had lost all strength and my pectoral muscles were screaming as I tried to tread water. Eventually, I was able to stand up, but a current that normally wouldn’t concern me felt like it was dragging me back to that swirly darkness, so I zig-zagged out of the water as quickly as I could, and, panting, told my family there would be no ocean for me anymore.

I couldn’t believe it: first the tits, then the running and now my ability to swim?! To flip in and out of the waves like a high-powered mermaid? My ability to swim is probably the athletic talent I’m most proud of, so I am particularly sad that my body is unable to do it at this time. Still, we have to hope for the best, right?

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brca bullshit

Now I just can’t appreciate the mustache joke anymore…

I often walk by two wig shops every day at lunchtime in Old Town. In one of the shop windows, there’s a male mannequin with a wig on his head and a Ron-Burgundy-esque mustache on his face.
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I used to laugh with everyone else as we’d joke about how “no one would ever wear a wig like that” or “how ridiculous would that look on someone?”

A few days ago, though, out of the blue, something just gutted me when I walked past and heard a group of young women laughing and pointing at the wigs in the window. It was like I suddenly had a borderline-PTSD flashback to December, when everyone thought that I was going to have to go through chemo.

I remember walking past a wig one day during those uncertain weeks and feeling sad but resolute that if my precious hair (and I do mean precious – I’m not too vain normally, but nearly everyone envies my thick, fine, soft hair) had to go, then I was going to be rocking the neon pink wig I still see in the window everyday.

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I even remember how my head itched that day when I thought about covering it with fake hair, and I found myself wondering all of a sudden why they were so funny to people. I just suddenly lost the humor in the situation as I saw my grandmothers wig and my Aunt’s wigs and my cousins’ wigs flashing through my memory – wigs were never funny in my family; they were a coping mechanism, a way for us to survive.

I still see the mustached head almost every day, but since that moment of remembering a few days ago, I have been thinking about the “Mr. White” character in “Breaking Bad” (GREAT show, btw), who started with full facial hair and when his family forced him to go through chemo he shaved his whole head and face…maybe someone like him would like that mustache?
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Perhaps to have just a tiny piece of his dignity as he suffers the inhumane suffering and pain demanded by this stupid disease? Really, he’s too badass for any wig or fake mustache, but he was the only example I could think of…

I’m sorry for laughing at you before, wigs. I pretended you weren’t a valuable part of people to me then. I allowed myself to ignore how important dignity and grace are when you are forced to undergo such a terrible ordeal. Honestly, I think I just wanted to ignore the fact that you were almost a part of me.

brca bullshit

Holding a fat baby & carrying a laundry basket – all in one weekend!

I don’t think things are getting *better*, per se, but I think I’m getting much more used to how things are. It helps a lot to have J around every day to help, even if he’s been pretty exhausted and sore himself these last few days.

New coping mechanisms:

  • If I keep moving, often times I can force myself past the fatigue – but God help me if I sit down!
  • If I take my adderrall later in the morning at work, then I am often able to sustain my brain and most times find myself working until the bitter end.
  • I can drag heavy things if I get down low and push them, then sit down on a step and pull them into my lap… thus, the laundry baskets.

Still, though, the sharp pains and lumps and bumps and stitches remind me that things are not really much better … and since next Tuesday is the 5-month anniversary of this stupid surgery, I feel a little depressed that I don’t have an answer by now. My pain doc ordered a chest x-ray, and I’ve kind of been putting it off, because it likely won’t show anything (I know my mother is secretly hoping that they left a pair of scissors in there or something), since x-rays can’t pick up nerve damage or other possible causes of this frequent pain. I’m really trying to hang in there, I really am, but some days are very, very hard.

Now, on to the fat (by fat, I mean heavy, healthy and beautiful!) baby!:

It felt so good to be the baby hog again!


I also had the pleasure of snuggling with his older brother–going to be a heartbreaker, eh ladies?

All-in-all, it was a crazy weekend full of moving/cleaning stuff, potato chips & french onion dip, hogging babies, doing laundry and even some Dogfishead gluten-free beer! Woo!

Occasionally, it is the better strategy to smile and go along with the tide rather than fight the current.

brca bullshit

And there goes the wrench…

Dr. B thinks my reconstruction looks “great” and sees nothing wrong with it other than the left implant bottoming out. This makes no sense compared to Dr. F’s assessment, but there we have it. It’s what I wanted to hear… but it doesn’t explain anything about the pain. He wasn’t warm and fuzzy, and there was something about him that I just didn’t love, but he was professional and he explained a lot about why I *could* be in pain… but not this much pain.

Once again, he was surprised by my stitches, which are multiplying every week and said, like every other doctor, “those should have dissolved by now”. Uh, gee, thanks. I figured that out. He ordered blood tests and promised an MRI if anything looked strange, which was more reassuring to my Mom than to me, but there you have it. I have a new plastic surgeon, I guess. At least he’s “in network”, right?

I should be happier that everyone disagrees with Dr. F, but really, I just want an end to the pain. Truly, if a surgery would do that, I think that unlike last week, I’d take it over this uselessness. “Can you carry this for me?”, “Can you open this for me?”, “Can you reach that for me?”, “Can you help me with this?”, “Can you do me a favor?” I’m so tired of being a trainwreck. A burden. A pain in the ass.

To add insult to injury, I faxed the application for a temporary handicap parking permit because I got ticket number 4 last week, because parallel parking is so painful, and mostly because my Mom suggested it, so I sent it to my pain doc. No response. Sigh.

So, I tried to make an appointment with him, but I can’t get one with his P.A. until 7/30 and I’ll be in Chicago, so I had to settle for 8/1. Can’t anyone work with me? Let’s go, people, pain is PAIN. I’m also noticing some slight edema on my legs and some autoimmune symptoms that I didn’t have before. Mental? Physical? Infection? Who knows? All I know is that it’s getting worse and it’s making it difficult to do my job (and hold a pen/use my dominant hand/open doors/etc). This has got to end, and it doesn’t seem that any amount of valium or vicodin is enough…

brca bullshit

Inching towards an answer…but screeching to a halt. Again.

I got a text from my Mom’s friend – the one who set up the semi-clandestine meeting with Dr. F in his hotel room when he was in town lecturing last Saturday (where I learned that my continued upward climb on this journey might get rockier still) – with the information for the surgeon he recommended I call. He recommended him so highly, in fact, that he called him “his clone” – and everything I’ve read about him so far leads me to believe that he will be as kind and gentle as Dr. F.

So, oozing with anticipation, I called first thing on Monday morning and had to give almost my entire medical history to the nurse? receptionist? random lady answering the phone? – but after mentioning the phrase “possible infection” a few times, she managed to squeeze me in at 8:30am on Friday. This Friday. I was so excited I could hardly contain myself, and my boss seemed to be especially flexible telling me to “see what time I made it in” before requesting time off.

This was all fine and dandy until about an hour ago when that same lady called me back to tell me that she had to cancel my appointment. I was rescheduled to see him on 7/24 – two days before I leave for Chicago – so my anxiety started build. Again, another lesson about remembering that when things seem too good to be true, they usually are…

BUT, then a few days later she called to let me know he could squeeze me in on 7/13 instead! So, things could be worse, but I guess I’ll find out when I find out.

brca bullshit

Breakdown

Pile of Bras

On Wednesday J asked me to get things ready for GoodWill. So, I went through bags and boxes and drawers and then I came to it: my little basket of bras, tucked away for when everything was healed and I could go back to normal. My Victoria’s Secret bras, my Nordstroms bras, my designer bras, my designer-knock-off bras… my sexy ones, my comfy ones, my rainbow-colored ones and my faded gray-ish white ones. First I lovingly stacked them (the picture to the left isn’t an actual photo, but I did it almost exactly like that), remembering when I had bought them, with what I had worn them, how fashionable I had felt… then I shoved all of them, angrily, into one heap in the bag, and started to sob. And sob. And sob. And sob.

Despite a few similar outbursts having occurred like this, I’m still not sure J knew quite what to do, so he took the bags of clothes to the car, and then came back and hugged me for a while. After that, I felt paralyzed. I said, out loud, “I wasn’t depressed before, but I am now” and I curled up in bed and stared at the wall clutching my duvet and rejecting any and all attempts he made to get me up and moving and doing something fun. My parents called, I ignored them for a while, then answered the phone and said something morose, probably leaving them in a panic, and went back to my semi-comatose state. The cats wandered up after a bit, but didn’t lay against me as they normally do – they kept to the edges of the bed, and seemed unsure of how to react.

Really, I just kept thinking over and over “why would I do this to myself AGAIN?” Why would I put myself through the SAME pain, the same recovery, the same emotional rollercoaster – with no guarantee that it would be any better, that it would decrease the pain or even  worsen it — or even that I would survive another surgery. Surgeries are scary. I did it once. I was brave. I was doing it for my future family. As I laid there I though… “maybe I could live with this pain for the rest of my life.” I’d never be able to pick up my kids. I’d never be able to run. I’d have to diet obsessively to maintain the weight I’ve already put on since the surgery and the absence of physical activity. This pain affects everyone around me as much as it affects me — I can’t do a whole lot on my own anymore.

Still, I’d rather not have another surgery. I’ve said this out loud a few times, but people brush me off and think that I’m silly – of course I’ll have the surgery, of course it will ease the pain, of course the recovery will be easier, of course I won’t lose my job…. of course it won’t cost thousands of dollars to RE-do the surgery that has already been done. But I might not. It might not. It might not be. I just might. It just might. No one can know the what/when/why/where/how of the future. Is it worth the risk?

That being said, my reality line has been a bit blurred lately, and I have trouble making decisions (can you blame me after over 3 straight months of Vicodin and Valium and Wellbutrin and Pristiq as well as nearly a month of Neurontin and other mind-melting drugs…). I find myself standing in a supermarket aisle sometimes staring at the label and I look in my cart and don’t remember putting any of the things in it. So, maybe I’m not qualified to make big decisions like this, but I can’t help asking myself whether I really want to go through all that again? Worse, do I want to put my family through that again? J is moving in with me in 3 weeks — I should be over the moon ecstatic that he is making this commitment and we are taking that next step in our relationship, but all I can think is “is he prepared for all of this?”

More about my thoughts on J: I don’t want him to suffer during our first year “together”. We have had a whirlwind relationship to begin with, and the surgery put a lot of pressure for it to be serious, so I want to enjoy getting to know him even more and spending my days waking up with him and going to sleep with him and laughing and joking and fighting and making up – he deserves that, more than anyone. WE deserve that.

Not: Drains and vomit and expensive prescriptions and bland meals and giant pillows that push him out of bed.
Not: sponge baths and shower chairs and helping me in and out of everything (the car, the bed, the couch, the shower, etc.).
NOT: Feeling responsibility to take care of every little thing and rush home everyday and worry and wish he were at home taking care of me. And, although we both adore them dearly…
NOT: Having my mother and/or father living with us to take care of me all of the time.

He is, without a doubt, the man I want to marry. I have been sure of that since before we even started dating “seriously” and his desire to be with me even DESPITE all of the chaos and the horrible things he’s had to help me through and witness and the pain he’s had to endure watching me go through this — he is an incredible man. He will be a wonderful father to our precious children, and he will be a supportive husband to me, no matter what stage of this health process I may be in. Sure, we have our “squabbles”, but it’s because we’re both very stubborn, and knowing that we are both able to walk away from them feeling the love and respect of the other person is a mark of a great relationship. To be very honest, I do worry (a lot) that he stays with me because he wants to take care of me, but know that he does love me, and with the support that he gives without my even asking for it, I can’t help believe it – even if I feel sometimes that he’s not quite as “sure” as I’ve always been.

Anyone who reads XKCD knows that the author’s (young, I think…) fiancee has been struggling with breast cancer. I think this graphic, is probably what’s going on not only in my head, but probably J’s head as well (although J’s purple would be larger, and my green/pink would be larger, etc.). He wants me to be cancer-free… that’s all he’s concerned about, and the questions he asks are all centered around that idea. But the thing that he said to me off-handedly the other night was what stuck with me: “I’ll support whatever decision you make. We will make it work, one way or another. We are a team.”

That’s something I’ve been saying to him about his job search, and to me, that reaffirms that we are supposed to be together. My angels sent me an angel, and whether I can never wear a cute halter top again, or whether this second surgery really does turn out to be the answer to my prayers, I will be forever grateful for him, and for my family and all of their support. I couldn’t ask for a better safety-net as I walk this tight rope above the unknown.

brca bullshit

More progress… but backwards, this time.

I met with the handsome young well-known plastic surgeon from Miami who examined me as a favor to a friend of a friend … and all he had to do was look to tell me they were all wrong. The first words out of his mouth were “it’s all got to come out and be re-done”, which broke my heart. But the next words out of his mouth were like angel singing in a chorus: “No wonder you’re in pain – your pec muscle is stretched to tight and it’s connection to the 3;ekls;kfo  muscle (sorry, I wasn’t paying THAT great attention) is pulling on your back.” No psychiatrists. No anxiety tests or increase of SSRIs. A logical, clear, concise explanation of my pain and suffering – not only did he believe me, he expected that I’d be in pain. It was a bittersweet visit, but he has a colleague in Reston who  he recommends as his “clone”.

Funniest thing, though… my PS, Dr. N, was his attending in med school. Hilarious.

So, we start over. Like Sisyphus forever rolling the rock up the hill only for it to roll back down again, onward I climb. This time, tissue expanders, fills, the whole works. But, he thinks once all the scar tissue comes out and my skin isn’t stretched so tight, a lot of my discomfort will be alleviated. That is music to my ears, and so I grab my hiking boots and prepare to fight another battle with health insurance and work and disability and everything else…. again.

Here’s how positive I want to feel:

But here’s what’s going on in my head:

…. and I’m still getting stronger. My soul will be iron-clad when all of this is finished.

brca bullshit

Progress? A little. For now.

While the effort made was still sub-par, after the email exchanges (which can be found below), the rest of the phone conversations went like this: *ass kiss* *ass kiss* *ass kiss*

Funny, though – wouldn’t you know it? This stitch that has been plaguing me for TWO MONTHS has started to dissolve and disappear? Incredible timing after I made such a fuss about it… oh well! Bye bye ugly stitch zit!

Current plan: see some big whig plastic surgeon one of my Mom’s friends knows on Saturday morning, get his opinion on some things, maybe see what my BS’s PT Doc/Miracle Worker that she continues to rave about has to offer me… but most definitely have an MRI – I want to SEE that there is no stitch out of place (except the one that was holding the left implant… ::sigh::) and that there’s not some surgical instrument or other foreign body floating around in there causing me this pain that seems to befuddle everyone.

At least one thing is clear: she gets that I’m not crazy, she’s now puzzled too (and seems more determined to come to a solution) and she is looking at things from my perspective for the first time. It’s hard for a surgeon to admit when she’s wrong, so I’ll appreciate the fact that she’s searching for this missing link, even if it did take 3 months to get things moving.

For the record, here were our email exchanges (mine is PINK of course). I post these because I believe in advocating for oneself, and not being talked into or tricked into thinking that you do not know your own body – trust me, you do. If you need help advocating for yourself, you let me know. I love to write angry-but-professional emails! 🙂

  1. Initial Email on 6/26 (see previous post)
  2. BS’ Response on 6/27:

Hi Ms. Holden,

This email is in response to the email that you sent on June 26, 2012 to me, Nurse A and Nurse C.

Recovery from surgery varies from one patient to another patient even when the same surgery has been performed.  However, the concerns you raised should be assessed and I will be glad to examine you in our Center.

It would be very unusual and unlikely to develop something bad like a cancer so soon after a prophylactic mastectomy so in all likelihood what you are feeling is scar tissue and perhaps a slightly enlarged lymph node in the axilla. As we discussed in the past the plastic surgeon does feel that the left implant needs more surgery, but any more surgery especially one that tightens the area may lead to more pain and so I understand your hesitation as well as that of the plastic surgeon. As far as the stitch poking as we discussed I think we are all afraid to make an incision to remove it as that increases the risk of infection, which could lead to other problems.

It sounds like Dr. M and Dr. Ch are helping and I defer to their expertise. Nurse A has left and Nurse C will be leaving soon but again I am happy to see you and take a look at these areas. There might not be anything I can do but I am happy to see you and give you my opinion. I think we need to let you heal and hope that these muscle spasms continue to improve.

3. My response (filled with the boiling rage of a thousand suns, btw) on 6/27:

Dr. C,
Quite frankly, that is exactly the response that I was expecting, but it was not the response for which I was hoping. It does, however, explain why Nurse A has not returned my phone calls or emails. I was told she was my primary point of contact, so while it is a relief to know that I was not being ignored, it is frustrating that her voicemail is still active (in fact I called her today before I called the main number to seek out Nurse C) and it says nothing about her no longer working there, as well as the fact that I get no bounce-backs or auto-forwards/replies from her email either. I hope other patients are not experiencing similar situations.

Basically, what I gathered from your email below is that you DO think that I should be seen, but you DO NOT think that they are worrisome issues in all likelihood. That is what I expected you to say, and I have read much to that effect (although my mind never went to Cancer). I understand that you have to say as little as possible to avoid liability, and I appreciate that you are “happy” to see me in your office. What I do not understand about your email are the following sentences:

  • As we discussed in the past the plastic surgeon does feel that the left implant needs more surgery, but any more surgery especially one that tightens the area may lead to more pain and so I understand your hesitation as well as that of the plastic surgeon.

We have, in fact, not discussed this in the past, but we have discussed how I felt about said plastic surgeon. I am not hesitant to have the issue fixed, I am simply frustrated that it needs fixing – honestly, with as much pain as I am in, a little more does not scare me a bit. I am currently focusing my energy on trying to find a doctor who will treat me with the respect I deserve. Dr. N thought I was “crazy” at 3 weeks needing more pain medicine, so I imagine now, 10 weeks later, he’d probably cling to, if not expand, that unfounded and incorrect preconceived assumption. Being emotional does not equate to being crazy, for the record.

  • As far as the stitch poking as we discussed I think we are all afraid to make an incision to remove it as that increases the risk of infection, which could lead to other problems.

I don’t understand why an incision has to be made if it is poking out of my skin. If I can grasp it with tweezers and pull, then it clearly does not require an incision. The issue is that when my mother or I tried pulling, it felt as though it was stuck on something and will not move much – so it sits, like a giant pimple on the only breast worth looking at. I am not a vain woman, but it is difficult to form a positive self-image at 29 with one pimply (but otherwise fairly formed) breast and one that looks like a Dali painting sitting too near to an open flame.

  •  It sounds like Dr. M and Dr. Ch are helping and I defer to their expertise.

Neither one of these doctors has ever dealt with a mastectomy patient before me, and thus, have no “expertise” where my care is concerned. I wrote the previous email requesting YOUR expertise, because all of the doctors that I see are general care physicians with specializations outside of the scope of my needs – except for you. Even the regular Physical Therapist that I waited over a month to see has no experience with mastectomy patients! Really, I would prefer that everyone STOP deferring to everyone else’s expertise, because it is not getting me the answers that I need.

Additionally, their treatments involve medication and only medication. I take so many pills that sometimes I lose count and have to start again each morning. What I want is to be able to stop taking them – all of them – and I intend to find alternatives to medication to manage (and eventually eradicate) my pain, whether they are offered to me, or whether I have to seek them out at great lengths.

  • There might not be anything I can do but I am happy to see you and give you my opinion. I think we need to let you heal and hope that these muscle spasms continue to improve.

I understand that an opinion on a situation is all that any doctor can give to any patient with just a physical exam, but there are diagnostic tools that as of yet NO doctor has utilized that allow them the ability to give more than just “an opinion”. Ultrasounds and CT Scans and MRIs – no imaging AT ALL has been done post surgery, so if everyone is telling me that I “should be feeling better by now”, then that leads me to believe that there is something wrong. Clearly my situation is uncommon and at the very least worth a second look – but no one has even given it a first look. I hope you will consider these tools, because no one else has, and I would love for you to solve the mystery for me.

I am tired of “healing” time. I am ready to get on with my life. There has to be an explanation for why I am in so much pain and why I have such extreme muscle spasms that people can now see them from across the room (I am not kidding, and I have video if you would like to see it). I have lost countless hours of wages that I desperately need to keep afloat on top of these extraordinary medical bills – copays and medications alone run between $3-400 a month. I need to be able to focus on settling down and starting my family, and enjoying the lack of worry that this surgery was supposed to give me. Instead, I continue to struggle to keep my house clean, have difficulty parallel parking and can send myself into full body spasm if I forget not to grab the hand rail and pull myself up the steps when I am tired.

Please consider my situation with MY glasses on and try to see the world from my perspective. I have been patient, I have been courteous, I have been forgiving, but above all, I have been suffering and I would appreciate it if you would let me know as to whether or not you have any ability at all to help me in any way – or even if you’re committed to trying.

Again, I appreciate your time in reading this, and respect that you are very busy. Now that I know to go through the main number exclusively, I will do that.

4. Her response on 6/28:

Why don’t you come in. If the stitch is sticking out (it wasn’t when I last saw you). I’ll cut it. I’ll tell inova the visit is complimentary.
I have no doubt your frustrated, unfortunately you are unique even for me.  I’d be happy to order imaging but I’m not sure it will help and I don’t want to waste your time and money but we can discuss.

Sent from my iPhone

[Notice a change in tone here? In formality/language? In communication device, even?]

Admitting that they don’t know something or that they could have made an error is hard for surgeons, but I think we’re finally on the right track. They are now (as they should have been all along) connecting the dots and filling in the holes. I am just thankful that it didn’t take 3 MORE months, because she’s the head of the breast care center at the only major hospital covered by my insurance, so I suppose I would have had to have made peace eventually!

Lesson to be learned for those just starting out: Advocate for yourself, because clearly no one else is going to do it for you. Ultimately, you know what’s right, you know what’s best for you – tell them, and if they disagree, ASK WHY. Make them explain EVERY DECISION to you – I was kept in the dark for too much of this process and I felt that led to me getting sub-par care. Just ask questions – and if you don’t like the answer, ask it a different way, or find someone who will give you the answer you are seeking.

Understanding is the key to this lifestyle – if your life is a mystery that even you can’t solve, you are in a pretty bad place!

brca bullshit

Thirteen week “Boobieversary” (and no where near the finish line…)

This is the email I just sent to my breast surgeon:

Hi Dr. Co,

I had not heard any more from your office after my last visit, and now my 3-month “free care” period has elapsed so I don’t know that I can afford a visit, but I have some things that are concerning me, so I am hoping you can tell me whether I need to come and see you. This whole process has been a very frustrating one and I think if I had known that I would suffer this much physically (and financially!), I probably would have just forgone the whole thing and waited for the inevitable – at least with Cancer people don’t ask you “but didn’t you CHOOSE to have this surgery?”. I guess I thought there would be someone checking in on things and that I would be seen more regularly, but instead I feel as though I was seen only when I requested to be seen and frankly, I was routinely sent to the psychiatrist (who does not think that this is an emotional issue, in case she didn’t relay that to you). Below are my concerns, and I would greatly appreciate it if you would give me an honest opinion as to whether any of them seem to be out of the ordinary enough to be worth losing half a day’s pay and paying a copay to schedule an appointment for (or if they are normal occurrences):

1. I have a very hard spot on the right side of my incision on my right breast (which I assume is scar tissue) that is growing larger and larger and is beginning to be disconcerting and even my boyfriend has noticed the increase in size. I have been massaging it like every book in the world says to do, but it is still hard as a rock.

2. I have what feels like a small lump in my left armpit, but it is so painful to touch either armpit that I can’t be sure how big it is, or if there is a corresponding one on the right side (my mobility on the left side is much more limited).

3. The implant on the left side is noticeably lower than it was since my last visit – I don’t know whether this is normal or something about which to be concerned. It is certainly annoying, and painful when in the wrong bra. If I wear the wrong bra (i.e. one that is supportive, but “squishes” the left side) I see bruising the next day.

4. The stitch remains. It looks like a zit, but when the head falls off (like in the shower), if I touch it at all, I can feel the sharp point from the stitch. It is extremely irritating and I sincerely hope that all the other bumps I have appearing all over the right breast don’t break through the skin like this one has.

5.I run a fairly consistent low-grade fever almost every day (usually somewhere between 99.1-99.9, when my normal temp is around 97.4). Last week it spiked to 102 (even after taking a 5/500 Vicodin per my normal morning routine), so my primary care doctor gave me a 3-day Zithromax prescription and that seemed to get rid of the high fever. The sad part is that I didn’t even know I had a fever (or that I was feeling sick at all) because I feel so generally horrible all the time that it took Dr. Ch PA noticing the flop sweat on my forehead to prompt anyone to question whether I was ill – this is a worry to me and often why I “undermedicate” my pain (against Dr. Ch’s orders) because I live in fear of not knowing when something is wrong because I’m taking pain killers.

Just to bring you up to speed:

  • Currently I am still doing physical therapy (which I do not feel is making a difference) and am skeptical that the ultrasonic therapy I am receiving is actually doing anything. I have been doing resistance band exercises (as well as very light modified yoga) at home to supplement this.
  • I am still seeing Dr. Ch and his PA for both trigger point injections (which so seem to help the spasms for a few days, but they will only do the right side because of the bottomed out implant on the left) and medication management.
  • I am currently taking: 300mg Neurontin 3x a Day, 5/500 Vicodins every 6 hours (I usually can do with 2, and I try to take as little as possible because I fear that, as I said above, I won’t know if there’s something SERIOUSLY wrong if I mask the pain all the time), and 2 10mg Valiums (one in the morning and one at night, although I usually only do half at night since the spasms generally only happen when I am pulling or pushing with my arms).
  • Also, while I feel that this should have no bearing whatsoever on my pain discussions, somehow I feel as though so far all of the doctors I have seen have chalked up my emotional reactions (which are genuinely in response to my frustration about being in pain or to being in EXTREME pain, as was the case with the physical therapist) to my psychiatric health, Dr. M would be happy to call and report on my emotional well-being to whomever is necessary – I see her regularly, and she has reassured me that this pain is genuine and not emotional or related to depression or anxiety.
I understand that this long email is taxing to read, and I appreciate your taking the time to read it, but I do hope you understand my frustration at not being taken seriously the last time I was seen. I wasn’t even examined aside from you telling me that the stitch hadn’t broken the skin (even though my mother had it in her tweezers the day before but was too afraid to pull on it), and then you mentioned something about the lack of Klonopin being the issue for the pain (which never made sense to me because I can’t take Klonopin with Valium). I do appreciate you connecting with my other doctors, and I do appreciate [Nurse C] getting me physical therapy spots (even though I just got a very large bill saying that they are out of network – an issue I will take up with [Nurse A and/or Nurse C] separately), but I am 29 years old and I can’t lift my vacuum cleaner or take out my own garbage cans or even pay my bills because every time I turn around there’s another $30 copay that is a direct result of something that happened in this surgery – the one that is now causing me constant pain. Everyone else I know that had this surgery is back at the gym already and lifting their children and moving furniture around, but I struggled to lift my 12lb cat to take him to the vet.

Please help me understand what is normal and what is not so that I can save the money (and save you the time). If any of these things seem abnormal, please call me or have someone call me and tell me when I need to be seen.

Thank you again for taking the time to read this. I look forward to hearing from you soon.

Emily

You tell me – is that an email that someone at 13 weeks should be writing? Should I have to update my own doctor on the status of my treatment? Should I have to advocate for myself to find “in network” providers when my doctors insist they use the “experts” they recommend? I’m not a doctor, no, but at this point, I am feeling like I know more about what is going on with me than she does… and that is both sad and scary.

brca bullshit

Nine Week “Boobie”Versary

Last week my physical therapist hurt me so badly (on Friday) that she wanted me to go to the ER. She saw the spasms, she saw the pain and for ONCE someone with any power could advocate for me.

She called my Dr. C & Dr. Ch and forced them to talk to one another. She described the pain and the scene and the crying — and Dr. C immediately took that to mean that the problem was psychological.

SO, after a very nice visit with Dr. M to assure everyone that I’m perfectly happy and doing better than ever before, everyone now believes that I am in pain. Hallelujah.

Dr. Ch has started trigger point injections using lidocaine and toridol (my old friend the liquid ibuprofen) and at first I was skeptical and didn’t feel any different… but then I did. My right side I just a little less… sore? achey? Dr. M increased my dosage of Gabapenten, so that could be helping too, but I can’t seem to induce a spasm in my right breast. Even if this is all I get out of it, I’m in. He won’t touch my left side until I’ve had it looked at by another plastic surgeon and gave me a referral. I’m really hoping he’s “in network”!

Also, J and I heard about the house and I’m really hoping my terrible credit score doesn’t hold us back. That would be really sad. Apparently J didn’t show up on the credit report, so we gave him our copies of the ones we got off line (free credit report.com is NOT FREE!), so I’m keeping my fingers crossed. We would be doing this guy a FAVOR taking over a shitty place like this, but he’s insisting on being an asshole. Ugh. I’m stressed about it, and stress is not good for me!

brca bullshit

Eight Week “Boobie” Versary

Today was my first *real* physical therapy session, and it was amazing. Like…the most painful massage in the world, but I felt looser and I learned a lot, which are two good goals.

That is… until I woke up the next morning and couldn’t move. Everything was right back to the way that it was while on the patch and I was MISERABLE. Plus, the physical therapy place keeps screwing up my appointments, and I’m having what leave I have earned slowly dripping away.

I hate this. I hate 100% of this, and sometimes I question whether I doing this to myself was a mistake. Everyone who’s been through chemo and radiation and much worse pain would scoff at my selfishness… but in some ways, I imagine my pain compares some to their own.

Work is, however, getting better and while my boss and I are at odds over leave and hours, she’s trying to be flexible with me and has noticed the EXTREME improvement in my work – both ethic and productivity. This is a pace I’m not sure I can keep up, but at least I’m not staring at the wall anymore.