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.


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.