Four Months In and All I Get is This Lousy Morphine?

J and I are heading to Chicago this weekend for his Grandmother’s 90th birthday. I have never been more excited for a “vacation” because:

  1. I’ve never been to Chicago before.
  2. I get to meet the rest of his family.
  3. I have two days off of work that are non-boobie-related.
  4. I can pretend, for a minute, that I live a normal life.

Before we go, though, I wanted to see my pain doctors, and they just couldn’t seem to squeeze me in… BUT, after much fussing, complaining, and some very annoying emails, they squeezed me in for a medicine consultation, trigger point shots, and she filled out my handicap parking permit (small victories). I really don’t want to switch to an all-morphine pain killer because they have made me sick in the past, but I guess I don’t really have many options left: I either take Vicodin to remove the sharp edges and nothing more, or I branch out and try what they’re suggesting (morphine, celebrex and a topical pain reliever that sounds interesting…). Whatever will help me get through the trip without the family knowing that I’m ill/fawning over me because of it will do!

Still… 4 months, and morphine’s all they’ve got?

brca bullshit

And there goes the wrench…

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

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

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

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

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

brca bullshit

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

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

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

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

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

brca bullshit


Pile of Bras

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

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

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

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

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

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

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

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

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

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

brca bullshit

More progress… but backwards, this time.

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

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

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

Here’s how positive I want to feel:

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

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