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

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

Three Week “Boobie”versary

After my last post, I couldn’t bear to post any more. I will probably go back and retro-actively post from my notes about each day, but for now, I have ONE more day until I go back to work.

Backstory –I had several setbacks:

1) I had my right drain pulled on 4/10/12 and the drain pull was painless and quick. Then, however, the nerve pain began. The first night climbing the stairs I had a searing pain (like a fiery knife) in my back just to the left of my right shoulder blade. My mother gave me a vicodin and a valium and put me in bed, and eventually the pain subsided. This happened again the following day, in the exact same spot. My chest spasms continued (and do to this day – but are usually managed by gritting my teeth or digging my nails in my palm…and occasionally 5mg of valium).

2) On 4/13/12, I went back and had my left drain pulled. Again, no pain, just discomfort, and he acknowledged the implant asymmetry and said that we could not discuss a “revision surgery” for at least 3 months – but, he answered none of my questions about the invasive nature of the procedure, healing time or scarring. I then asked for more pain meds and explained about the searing pain in my back in addition to the continual muscle spasms in my chest and was dismissed. He actually asked me if I was seeing a psychiatrist. Through my gritted teeth and tears of pain I accepted the papers he handed me recommending “pain management specialists” and a referral to see a physical therapist …. but I felt like time was going backwards. I honestly was feeling WORSE physically than I had when I came home from the hospital. What was worse was it was close to 4pm when I was able to call the “pain management specialists” and couldn’t get an appointment. I spent the weekend in bed out of fear of having a spasm and not having medicine to deal with it.

3) On Saturday, I was in horrible pain, and took it out on my boyfriend. I was awful. Then, later I had another back spasm in the parking lot of Harris Teeter and J almost had to carry me inside once we got home. He helped me to bed, gave me my very last vicodin and a valium and laid with me until the spasm subsided. It prevented us from watching any of the three RedBox DVDs we rented and wasted most of the evening with me a whimpering mess. Very pathetic … but somehow, he still made me french toast in the morning. Such a good, good man.

4) On Monday, I called my PCP (whom I affectionately call the “pill pusher” because he offers a lot of pharmaceutical options every time I see him). I got an appointment immediately, he wrote both prescriptions without hesitation, then recommended both a “pain management specialist” and a physical therapist. He was both kind and understanding, palpated (gently) my back and chest, and said it was entirely possible that the drain was placed too close to a nerve cluster and that it will be agitated when I do certain motions. He was very kind, and reassuring, and made me realize how cold and uncaring my PS had been with me. Thank goodness for him and his kindness.

Today, though, I woke up early, took J to the metro so he could go to work, came back, took a nap, watching the landing of the Discovery on TV, and then went to the bakery to reassure them I wasn’t dead (since I’d been sending the men in my life to retrieve delicious gluten-free baked goods for the previous 4 days). Then I came home and cleaned and wrote thank-you notes and I’m pretty sure I was more productive today than I have been for the last 4 days combined. One more day until I have to return to work, and I’m starting to get anxious….

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Calmer Waters

Good Guy is back. Hesitantly at first, but now pretty solidly. It’s like I’m Ingrid Berman and I get a second chance with Humphrey Bogart!

The best part: he understands. He knows it’s tough to get here and that I won’t be able to drive for a while…he knows why I got on the plane, but even still, he waited for me to tell the pilot to turn around and head back to where I knew I should be. This decision makes MUCH more sense to me, even it isn’t the most “pragmatic” decision.

Sigh. We’ll see how he feels after the surgery, but just now, things are feeling pretty damn good.

*Edited to be made public 3/1/12*

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Rough Seas Ahead

I feel pretty abandoned these days.

  • Boyfriend left (said he “just wasn’t attracted to me” – coincidentally just a few days after he saw the biopsy site and helped me change the dressing). Just what you want to hear when you’re getting ready to completely alter your appearance…
  • Roommate left months ago to live with her boyfriend. I’ve slowly been spreading more of my things around, but I feel like if she comes home, she won’t have any space, so I’m constantly holding back. Mostly I just miss her company.
  • Ex-boyfriend, who swore up and down that he would be “there for me” has a crazy jealous new girlfriend who has a problem with him seeing me. I only moved to Virginia for him, no biggie. Sigh.

So, it’s been me and my Mom. She’s been taking random days off of work and hanging out with me, and that’s been nice. The meds are kind of helping, but I still feel like I want to cry every moment of every day. I’m not even sad or scared about this… I just feel so helpless and alone. I don’t want my cats to eat my face. 😦

*Edited to be made public 2/29/12*

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Swimming through life.

I don’t think that I’ve ever slept well in my adult life, but lately, I’m really struggling. My brain buzzes with thoughts of too few vacation days and doctors appointments and medical bills and all the things I’d like to do before I have this surgery. It’s all a foggy mess – the only saving grace is the calendar function (and my new One Note app) on my iPhone. Otherwise, I’d be late for everything. Unprepared. Disheveled. Downright dirty, some days.

I haven’t overslept for anything in years. I rarely sleep longer than 3 hours in a row, even on a good night… but here I am drifting off at 2-3am and only waking up, long after my alarms were set to toll, because I hear the garbage truck banging around or the neighbor’s dog barking. I’m sleeping just enough to make me feel drained, drifting off in meetings, falling asleep in the shower standing up with the water running on my face… it feels like I’m swimming through my life. Swimming with lead weights wrapped around my ankles.

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Waterproof Mascara

I think most days in the past few months I have felt like I’m watching myself do things as if I’m an audience in the most terrible play. I am saying things, doing things, feeling things (and sharing those feelings) in ways and with people I never would have considered before all this started. Every night I lay in bed and think of all the things I said and did that day that just weren’t me. It’s like there’s an invisible force shoving my sensibilities aside to make room for a weak, ugly, pitiable thing that cowers in the corner and craves attention. Protection. Affection. She’s frightened, and she’s lonely….but she’s also not me.

Somehow, after months of pushing out of this pathetic rut, I’m back in the world of waterproof mascara. I cry again. A lot. The kind of tears that actually hurt when you squeeze them out.

Sometimes it’s because I’m afraid: Afraid of the pain that is coming. Afraid of how I will feel, how I will look…or, perhaps more worrisome, how the way people feel for and look at me will change.

Sometimes it is self-pity that seeps out of the corners of my eyelids as I desperately try to rest them night after sleepless night. Is it fair? No, probably not. But, fair or not, it is here. It is a demon. It is a curse. Or, it is a gift. It is a choice I have that the others didn’t.
It is something, that’s for sure.

  • Sure, it’s poor timing. Really, though, is there ever a good time to be sick?
  • Sure, it makes for a complicated existence. Complete with tense love scenes and questionable motives by everyone involved.
  • Sure, it will be painful and scary and possibly even someday kill me.
  • Sure, people will leave because they’re scared.
  • Sure, people will stay because they feel guilty.

But for now, tonight, in one of many sleepless nights to have passed, and undoubtedly infinitely more to come, I have to remind myself that the only person I can control is myself…even if that seems to be, on the most basic and fundamental level, a daunting task in and of itself most days. I cannot expect anything of anyone but myself. I cannot rely, nor depend on anyone to be there, in any way other than the ways in which they choose.

I am alone. But if you ask the real me, that is most certainly the way I prefer to be.

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