Wednesday, April 10, 2013

Next steps in place - huzzah!

I had to gush in the last post about all the wonderful people who have charmed my life in the last week, because this seemed imminently more important than sharing what happened in my appointment with my surgeon today. That's saying something, because it was a really good appointment.

Dr. Skinner didn't tell us much that we didn't already know, but it was still immensely helpful to just talk it through with her. (The first thing she said after "how are you" was, "You wanna take back the save-the-date? Am I uninvited?" No way!) One of the best things about Dr. Skinner is that even though she is a busy woman (head of the Breast Care Center at Strong Hospital), it always feels like she has all the time in the world for us. And at the end of the appointment, she said, "If you need to talk more, just call and set up an appointment. Or for shorter conversations, just call." So nice.

Okay, first some background info: First of all, while I've been told I had "mantel radiation," which is right down the middle and across the top of the chest (this was standard treatment for Hodgkin's), apparently I actually had a more focused radiation, aimed just at the affected areas. This explains why both breast cancers developed not on the inside near my sternum as you would expect, but along the edges. My Hodgkin's was in my neck, chest, and left armpit, so presumably there was more radiation exposure closer to the armpit, which is where the current cancer is. (The former was more underneath.) All this to say: my right side is likely at lower risk than my left, which explains why I have never had a problem on my right side. I may never have a problem on my right, for that matter.

Second, the plastic surgeon I saw told me that he would not be able to do both sides at once because the sort of reconstruction I need is such a big production, and has surgery sites on my front and my back. So even if I wanted to do both sides, I'd have to do them one at a a time.

Third, Dr. Skinner said she will not let me leave that cancer in there growing untreated until after the wedding. Obviously she can't force me to do anything, but she said very definitely that this is not something she would recommend. It needs to come out. Even though some research shows that DCIS may never turn into full blown cancer, it's not very reliable research and it would be foolish to risk it. As Michael pointed out, rolling the dice hasn't worked in our favor thus far.

Okay, now the options:
Option 1: I could do both sides right now. Get 'er done. Even though there is nothing concerning on the right side, this would eliminate the risk that something else would happen down the road. Some doctors are urging me to get both sides done eventually, so this would do it. That's the good thing. If I did this, I would not get reconstruction; I'd just stay flat chested, especially since they can't reconstruct both sides at once anyway.
Option 2: In response to my whining about wanting to fill out my wedding dress, Dr. Skinner said she would be willing to do a lumpectomy now to get the cancer out, and then a single or double mastectomy in 6 months, post-weddings. This isn't standard care, she said, but I'm way outside standard care anyway, so she's willing to work with me. Seems a little silly, though, to keep putting myself through surgery just for the vanity of having a two-boobed wedding.
Option 3: I could do the left, affected side right now, and keep monitoring the right side. If I did this, I would do reconstruction so I wouldn't be lopsided. It's a longer recovery, but since I would have to do this one side at a time anyway, it makes sense. This also has the benefit of preserving one healthy breast for breast-feeding. And emotionally, I feel a little calmer about losing just one side than both. And with two breasts (one fake, one healthy), I can feel beautiful in my pretty dresses and nice shirts and things for longer. (I know I don't need boobs to look beautiful, but it is the body I am used to and feel comfortable with.)

It's probably pretty clear from reading that which option feels the best to me. I realized as we were talking that this option made me feel the calmest. I am about 85-90% prepared to lose one breast, but only about 50% prepared to lose both. On the way out, I asked Michael if he had a gut feeling, and he said very definitively that option 3 made the most sense to him. When I talked to my dad later, he said the same. My best friend, the same (adding, "I need you to be around. I CANNOT lose you. What would I do without you? Your health comes first!!").

So the next step is to see a DIFFERENT plastic surgeon on Monday. He's the chief of plastic surgery. Dr. Skinner said, "I'll warn, you he's very... honest." She said people complain that he doesn't shy from telling people what can go wrong, because he wants them to be informed. I'm okay with that, as long as I know going in. I'd rather that than go into surgery with the assumption that everything will be perfect, and then come out with a less-than-expected result. I'm prepared this time. After we talk to him, we will set a date, sometime in the next month or so. This allows plenty of time to healed in time for wedding fun in August.

(Because Michael can't get family leave time until we are married, we may do a quickie wedding soon. I've always secretly wanted to get married at Niagara Falls. Then we'd have three weddings, just like my brother and sister-in-law. It was always my goal in life to match or exceed my brother's accomplishments, so this would do it! Three weddings! That should stick.)

As we left the hospital, I noticed that Michael and I were both in better spirits than we have been in a week. Chatty and upbeat. Michael noticed, too: "I feel much better having talked to Dr. Skinner!" I said he had a skip in his step that I hadn't seen in a while, and he said he felt it, too. Feels good to have a plan, and to feel good about an option. I mean, it's not great, but it is palatable! A little more chewing, and I think I'll be ready to swallow all this.


  1. Oh Jo!
    Have you noticed the number of hits your blog's been getting going up over the past 24 hours? That'd be me (and I'm assuming all the others who are also in the same boat as me). I've been thinking and praying for you all week, and I'm so glad that Dr Skinner was able to give you some options to mull over, including one that you feel more comfortable with!

    Also, Loren and I have an engagement gift for you that we want to send (a la your seminary friend), but it's not quite something we'd want to send you at work. If you get a minute in your oh-so-free time, message me your address and I'll get it in the mail!

    Sending our love and many many oboe-ma-tastic hugs,
    Laura, Loren, and Calvin (Luigi says hi to Klaus, too!)

  2. "two-boobed wedding" is the name of my new cover band. Covering whom, I'm not sure. Details.

    Thinking about you a lot the past glad to know you have a plan!

  3. Lots of love from New sounds like you're ticking things off the list. (And speaking as a frequent wedding officiant, I'm all in favor of Niagra Falls followed by church wedding....)

  4. Your attitude is phenomenal. That's all.
    Oh, and prayers, too. :)