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!

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