Tuesday, October 25, 2011

London Calling...

The whirlwind is finally dying down a bit, I think.  Since I last posted, I've meet with a plastic surgeon, got some anxiety meds from my GP, given blood for genetic testing (which came back negative! woo!), had a heart scan and gone through the chemo education appointment.

The last appointment before I leave for London is on Monday (10/31) and it's a final wrap up to make some decisions and schedule surgery and chemo. I'm a little nervous, because that makes it all real and gives me a day to dread/look forward to. My plan for London is to leave all this behind and just have an absolute blast. I may have to be given drugs in order to get on the plane back home, but I'm excited about the trip and I'm spending this week focusing on getting ready. It's surreal that it's almost here! God, I have so. much. to do.

As it stands at this moment, with the genetic test coming back negative, I won't need to have additional surgeries (no ovary removal or hysterectomy!) and I may be able to get my IV port inserted during the mastectomy surgery. I'd been on the fence for a while about whether to do the one boob or both, but I really think both is the right decision for me. The plastic surgeon can do the implant in one and a lift in the other for symmetry, but from the pictures I've seen, symmetry is more a theory than a reality. While that's important to me, I also don't want to have to deal with this again. If I keep the left one, I'll have to have a biopsy on the cyst, just to be sure, before surgery and I don't know that I can go through all the emotion and stress that comes with that again.

I’ve also had the clear reality that all of this is up to me. No one can take it away or do it for me. I know I’m not, but I feel so alone sometimes and that's really hard for me to deal with. One of the lessons to learn here, I guess: that it’s ok to be alone and that I can handle it.  But man, I hate that this shit wads up all your issues and throws them at you. It's hard to deal with health issues and emotional bullshit all at once, but you don't really get a choice. The best I can do is take deep breaths and try to focus on what I can control instead of what I can't. I have such little tolerance for being overwhelmed now, that I feel lucky if I can handle watching tv AND knitting at the same time. It's like I've totally accomplished something huge when I pull that off, "OMG I knit 5 rows and I paid attention to that show! Holy shit!".  That feels really lame, but it's just the way it is right now. I know it will get better, eventually.

I can't wait to be in London and just forget about all this for a while.  Bring it on.

Monday, October 10, 2011


I met with the oncologist today to learn about my recommended course of treatment. As I suspected, she wants to use the big guns. All of them. 'Kill it with fire' is pretty appropriate here.

After I come back from London, I'll have surgery, then 4-6 weeks after that I'll start chemo.  Two months of the AC chemo drugs (hard ass, red devil shit) for a total of four treatments, followed by once a week treatments of Taxol for 12 weeks. So, roughly 5-6 months of chemotherapy then a healthy diet of Tamoxifen for 5-10 years. No PET scan is required since things appear not to have spread beyond the one boob. Yay.

I was mostly mentally prepared for this news but I was still a bit stunned by the reality of it all. Reading about it on the internet is very different from having it told to you in a doctor's office. Suddenly it all applies to YOU. It is very real and hard to swallow.  I haven't really gotten upset about it, but the cumulative level of unfairness is overwhelming at times. You lose so much of what makes you feel feminine in all this, that it's often a mental battle just to keep your wits about you. Deep breathing helps. Knowing that it's all going to be ok in the end, regardless of what your demons tell you helps too.  Knowing that you'll still be desirable and beautiful is hard to see from here, but I believe it. I won't let it be any other way. I'm a 'make it work' kind of girl like that.

Next up is a heart scan on the 17th to make sure my heart can handle the chemo drugs (standard stuff) and a meeting with a genetic counselor to do the blood work for genetic testing. My needle phobia is in high gear since I'll be getting poked or stabbed in some way at every appointment from here on, so I've also ordered the good anxiety drugs (3 kinds!) from my GP.

I'm also putting up a wishlist on the sidebar for folks who feel like they'd like to do something to help. There is also a Lotsa Helping Hands team site, so if you'd like to be able to sign up for meals, tasks, or chemo fun times (aww yeah!), let me know or check my Facebook page for details from Carrie!

Wednesday, October 5, 2011

Live more, not less.

I spoke to my surgeon again this morning and got a few more pieces of information - at least one mastectomy, probably (but not definitely) followed by chemo. I have oncologist and plastic surgeon appointments next week, then a follow up with the surgeon to put all the pieces together and create a timeline.

I'm finding this whole process kind of interesting, in that you get tiny slivers of information with every phone call or appointment, but the full picture doesn't emerge until later.  I can only guess what I'll be going through, though I've prepared myself mentally for as many possibilities as I can think of. It's far less scary that way.

Honestly, the waiting between appointments is the hardest part right now. I'm very good at patience in some parts of my life, but I really suck at it in others.  Waiting sucks and I am not a fan. The anxiety is a lot to handle and the scared part of me just wants to curl up and hide to wait for the next bit of information to come. But, I'm aware that there are a multitude of life lessons I could learn here, and this is one of them. So instead of running away (since my body follows me anyway, damn thing), I'm taking a lesson from meditation and just sitting with my anxiety. Most of the time just taking a deep breath, then acknowledging it and saying something like, "I'm anxious and that's ok," makes me feel better. Sometimes I have to say that a LOT for it to sink in.

I also know that for me, taking a position in fear is damaging psychologically. It causes this vicious feedback loop that looks something like this: I'm scared and I hide > I think of more reasons to be scared and stay hidden > Some tiny thing happens to refuel that fear > The fear deepens and I hide even more.  A sneaky fear spiral where every tiny thing feeds on the next and before I know it I'm curled up in the fetal position and in tears.

But that's not who I really am, nor is it who I want to be.  I'm pretty determined not to let any of this break my spirit.  Yes, I have my freaked-the-fuck-out moments, but they don't dominate.  So I make sure to say yes when someone asks me to do something, even if it's just hanging out watching silly TV shows, because that one act tells the fear to STFU, that there's no home for it here. This is not going to keep me from saying yes to life. It will not keep me from living. If anything, it makes me want to sing from the mountain tops!  We only get this one life.  And we should live MORE, not less.

 So I say this to you whether you're going through a diagnosis like this or not: Live more, not less! Embrace every moment as often as you can. Say yes to life. Yes to experiences. Yes to fun and happiness. Yes to laughter.

You have a choice. Say yes.

(One of my favorite blogs is Tiny Buddha, and this is one of my favorite posts.)