Author: SisyphusRealized

brca bullshit

Breakdown

SisyphusRealized1 Comment

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.

SisyphusRealized3 Comments

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.

SisyphusRealizedLeave a comment

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…)

SisyphusRealized6 Comments

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

SisyphusRealizedLeave a comment

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

SisyphusRealizedLeave a comment

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.

brca bullshit

Seven Week “Boobie” Versary

SisyphusRealizedLeave a comment

Finally getting my way!

After 4 weeks of my breast care navigator (A) “trying” to get me an appointment, my BS had her main nurse (C) get me one for the very next day. A’s response: “I wish I could be as tenacious as C”. What the fuck does she think her job is?

Also, Dr. Ch has finally relented and let me go back to vicodin and valium (and gabapentin at night – yay!), and I can manage the pain much better this way (although I have to take lower doses at work…).

In an attempt to be social, on Saturday we went to visit J’s friends (originally from OH) that live in Reston (about 25-30min from my house). The saddest part was realizing that I couldn’t hold the baby because he was too heavy and I was afraid I’d drop him! Still the older boy (just about 2) was very gentle with me and kept pointing to me and saying “Mommy?” and I’d have to repeat “Not yet, little one, but sometime soon I hope!” making J all blush-y and cute.

A nice surprise was that when we got home, the whole house was cleaned from top to bottom by my awesome Mom and Dad. What a wonderful gift, and one that really helped me feel a little bit better about still feeling bad. We all went out to Rockland’s BBQ afterwards and it was a really great time.

The next day J had his softball game at a new field (Potomac Park) and we had to walk 1/2 a mile just from where we parked… then on the way back we had to stop and walk through the MLK memorial (which is beautiful, but c’mon, ladies, asking me to walk that far with the girls just a-bouncin’ away is asking just a little too much)!

[EDIT: At least the Orioles are playing awesomely!]

brca bullshit

Six Week “Boobie” Versary

SisyphusRealized3 Comments

Pain is all there is. I go to work like a zombie and just pray I can make it home … at which point I don’t eat and I just lay in bed and hug my brookstone nap pillow (to which I was going to link but apparently they don’t make them anymore?) I’m really glad I have my Mom’s larger one and the smaller one that my “family away from family” bought for me… I’d be sad to hear they discontinued the line, because they bring so much comfort and conformity.

Week 3 on the Butrans patch and I am miserable. I’m taking Vicodin on top of it, have constant muscle spasms and still have not been able to get approval from insurance for PT. In general, I’m feeling tired and weak and work is getting harder and harder to drag myself to…but since I have no leave, I have no choice.

Now if I could just rev up my hormones enough to keep J happy once and a while… How do you ladies handle sex when you’re so tired and sore?

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brca bullshit

Five Week “Boobie”versary

SisyphusRealized14 Comments

I can’t believe it’s been five weeks already.

More importantly, I can’t believe I still feel this awful after 5 weeks.

I know everyone was hoping I’d be feeling better, but apparently most people were expecting that I would be feeling better by now…and thus, they are frustrated with me, and I am frustrated with myself and around and around it goes.

I started week 2 of the Butrans pain patch last night after spending most of day 7 with the week 1 patch in complete agony. My back was on fire an both breasts felt heavy and sore and, well, damaged…it was like week 2 and 3 all over again! I put the new patch on (and promptly was covered in a rash all over the arm where patch 1 was…) and took Vicodin and Valium and went to bed.

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I’m supposed to smile and pretend that I’m recovering and moving on with my life and that things are getting better, but really, I’m in constant pain, and my brain feels like Swiss Cheese. I can’t blame chemo…I can’t blame old age…but my memory is just…gone. Slowly I’m accomplishing tasks and checking off items on my list, but it’s taking forever-way too long, and thus, the frustration.

Also, as a side note,…who the fuck can get themselves and their necessary items to work and back without carrying more than 5lbs?! My CATS weigh more than 5lbs! I really have tried, but that is not a realistic expectation for patients who have to go back to work. Especially if that patient works in IT.

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Bright Side:
My pain management doctor (Dr Ch) responds to emails on Saturdays and is constantly on top of things, offering suggestions to lessen the pain, unlike any of the doctors who were involved in the actual surgery. I would recommend him to anyone…when I see his emails checking in with me, I instantly feel heard and not ignored. Other than him, I’m done with all doctors associated with this surgery…although I’m not looking forward to finding new ones.

AND, my poor wonderful boyfriend (and wonderful parents!) continues to be supportive, and I believe with all my heart that he is the man I want to marry and spend the rest of my life with — even a few days apart from him make me so sad, and after that initial 3-month “honeymoon” period (which was so rushed because of the surgery, the poor man), he’s settled into a less physical and more loving, supporting role. I’m so grateful that a) he came back into my life b) he wasn’t scared away by the intense pace of all the crazy pre-surgery nonsense (family meet-and-greets, etc.) and c) that he is a “doer” – he just can’t sit and be lazy like I do, so he encourages me to be a tiny bit more productive and a tiny bit less “I’ll get to it tomorrow”. I’m sorry for the mush, but he’s just so amazingly wonderful that he balances out my complete and utter miserableness regarding the pain and the lack of energy.

[EDIT: I won my court case against my former employer for *ahem* a lot of money]

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Four Week “Boobie”versary

SisyphusRealizedLeave a comment

I’m a day late, but I’m not sure how I feel this week. I went back to work on Thursday of last week and immediately knew that was a mistake. I’m tired, I’m moving slowly, and I sure as hell can’t remember a damn thing anyone says to me… and driving fucking sucks. But, since I was so negative last week, here are some good things:

1) I met a new neighbor who very graciously carried my garbage cans for me last week because they are way too heavy for me to pull.

2) I’ve created a very effective system of taking my robe down with me, stripping in the laundry room and putting my clothes in the washer every day, so that I don’t have to carry a laundry basket… then, when J comes on Friday, all he will have to do is carry the basket up for me! 🙂

3) Even though I didn’t want to go see him, Dr. Ch, my pain management specialist, is awesome. He asked me to relay my story, and when we got to the plastic surgery visit, he blurted out “so, basically, he was an asshole?” and I laughed, agreed, and we continued with the consult. Except it wasn’t a consult… it was a full exam. He agrees that I likely have a pinched nerve as well as a considerable amount of nerve pain around my “divot” in my chest because that sunken spot has forced the nerves together and they are trying to connect harder than they were. He gave me a pain patch and it’s already starting to work – it will reach it’s full efficacy on Friday, so expect a full report then!

4) My BS finally saw me – she couldn’t get the stitch out either, but explained it was because of risk of infection and put a steri strip over it so it would stop catching on everything. Genius. She also (not-so-gently) shoved my implant back where it was supposed to be and said “the space is there, it just needs to be sewn in a different way”. When she did that, I could see how it would look exactly like the other one, and all the loose skin and wrinkles will go away. That made me feel immensely better (even though I did NOT want to have two surgeries), and hopefully it will be quick (both the surgery and the recovery) this time. She likened it to an exchange surgery, so I’m assuming those of you who have gone from expanders to implant can enlighten me more as to the pain and healing time.

5) I have an amazing family and an amazing boyfriend.

6) I have amazing friends.

7) My hand hurts at how many “thank-you” notes I’ve written … everyone was so good to me!

8) The worst is over. [EDIT: Jinxed myself there, didn’t I?!)

I didn’t take pictures yesterday because it was such a long day (I didn’t even get HOME until 9pm), but I’ll take and post them tonight….if I get home any earlier!

brca bullshit

Three Week “Boobie”versary

SisyphusRealized4 Comments

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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Post-Op with the BS

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Since my breast surgeon also decided to take spring break, I had my follow-up with Dr. Bruce. No drains out, but she did read the pathology report to me: abnormal cells (possible DCIS) but NO malignancy. They even (sorry if this is gross) cored out my nipples and took samples from there too–all clear!

This is wonderful news and I feel much better about the decision I made – it will save my life… I just know it will.

Left breast is slowly drooping more each day and becoming frustrating.

brca bullshit

Post-Op with the PS

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Since my PS AND BS are both out of town this week, I met with Dr. N’s Chief Resident Dr. I at the surgery center in McLean this morning. It was there that I learned three things:

1) My boobs look great. They put 500cc silicone implants in they are convinced I’m going to be happy with them.

2) I cannot OD on Valium. If I’m awake and in pain, then I can have more. I’ve been having a LOT of chest pressure and really have been feeling the muscle spasms as my primary complaint, and Dr. I said I’m not taking enough Valium or Vicodin (bless him).

3. It could be a year before my implants settle and my scars fade and all of that is settled …. but I didn’t do this for beauty – I did it for life.

Tomorrow is the post-op with the BS (or her partner Dr. B) because she’s also on spring break. Will updated tomorrow!

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Days one & two with my new boobies

SisyphusRealized4 Comments

All in all, I’m not in a tremendous amount of pain… I can’t definitively say that I won’t have any, or that it won’t be too much at times, but I woke up from anesthesia to my parents and my handsome man… I was feeling lucky!

The new boobs look swollen and disfigured, but I’ll let that image speak for itself, on the “graphic photos” page on this site. I think they’ll settle down nicely, and probably end up a little smaller than they were before, but I’ll be happy no matter what because of the wonderful thing I did for myself and my family.

I was discharged last night, and my Mom and I headed back here … greeted by two angry kitties! Now, one is in Caroline’s bed (since she left the door open when she came to get her bed frame), and the other is following behind me, per his traditional mama’s boy behavior. Now I’m struggling between awake and asleep wrapped in the beautiful blanket Lisa Mielke made me – so grateful for all the help given to me by so many people! Love you all!

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And I Pray

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To my family, my friends, my handsome man…a thousand thank-yous would never convey the gratitude I feel for your love and support.

After tomorrow, I won’t need to pray nightly that the next day or week or month will be the day that I feel a lump where a lump wasn’t before. I don’t need to pray every time the phone rings that it won’t be bad test results or a doctor telling me I need to have a follow-up test run. My angels will carry me through this surgery and I will wake up ready to start my new life. No more black cloud…only blue skies and happiness.

So now, I pray for anyone struggling to make the decision I did. I pray for all those having complications from their surgeries, and for those that are struggling mentally or physically with the effects of this teeny mutant.

Sure, I pray my surgery goes smoothly, and I pray my pathology reports are clear and I pray that I have an easy recovery…but somehow, I know that whether it’s an easy road or a hard one, I have so many willing and loving helpers that I’ll make it through.

Love to you all–pictures to come either tomorrow or Wednesday! 🙂