Friday, May 14, 2010

Day 10

I'm realizing that it's going to be hard to keep track of the days on this thing. It's all so new now, but the days will eventually reach into the hundreds. It only seems like a thousand days now, but as time goes on these blog titles could get complicated. Shorter blog today, just to say that I feel a little better about things than the last time I wrote. I was getting very paranoid about this triple negative issue, so I called the surgeon's nurse to ask why they hadn't mentioned something more about that to me in the office. She finally called me back to say that the surgeon wanted me to know that she doesn't make a surgical decision based on a chance of recurrence (supposedly higher with my type of cancer) but rather based on the best way to get the tumor out, which in my case is a lumpectomy.She went on to say "she said you don't need a mastectomy. That doesn't mean you can't get one if you want to though." OK, that's what I wanted someone to tell me the other day. What is the best course of action? The nurse also said that in the doctor's opinion, triple negative isn't necessarily more likely to recur, but is more aggressive metastatically (did I spell that right?). So then why didn't they order anything other than a chest xray and some blood tests for me? What about a bone scan, CT scan, etc.? She said that based on my imaging and exams, I don't need them. They don't know, but they don't think it's spread. I definitely felt relieved, at least for a day or so.

I'm nervous about waiting for the chest xray results. I had that done yesterday, along with my pre-op blood tests (assuming I can do the lumpectomy on June 4) and my gene test. I have to wait at least two weeks to get that back, and until then I'm going to go a little crazy. I really want to avoid that double mastectomy if I can, even though so many people seem to think that's the way to go. The other reason the gene test is so nerve-wracking is that it has implications for everyone who is a blood relative to me if I'm positive, including my kids, parents, brother, etc. Kind of a pandora's box. But if I'm negative that will make the surgery decision I've already made a lot easier to live with. One thing that helped was that the genetic counselor told me that many women who test positive don't even do extra surgery, they just get mammograms twice a year. Breast cancer grows slowly, so the idea is it would be found early. I will have to have mammograms all the time for the rest of my life anyway (as will Lenny, once she's 25, since she's related to me), but I don't think I would take that chance if I was BRCA positive.

I've been working, doing water aerobics, actually speaking to some people (not really on the phone yet though) and generally re-emerging into the world over the last few days. I hate all this waiting and find myself having cancer-envy. It seems like there are people who have lived through cancer all over the place, but there's something about breast cancer that involves way more waiting and wondering than other cancer types. If I am able to have the lumpectomy, it will be exactly one month after I was diagnosed. Doctors at Northwestern tell me that I'm lucky to get in so early! So what do you do, torture women for months, making them pretend to go about their normal lives? You have to wait another month or something after surgery to start chemo, do that for months, then hurry up and wait some more to start radiation. I've been told all women who find out they have breast cancer wish they could fast forward a year and look back and say, wow, I got through that. Well, one of the reasons they wish that is that the whole process takes so damn long.

I continue to appreciate everything that people are offering to do for us, and all of your good karma, emails, calls, and favors really do help, even while I still physically feel like myself. Emotionally I feel like someone else altogether, but it is getting a little better every day. I think I'm done with the intense grieving phase for now and I've entered into that acceptance stage. I'm still scared shitless, especially until I know what type of operation I need to have and whether my cancer has spread (I don't really find out my stage until a week AFTER surgery--more waiting). But I'm managing to do some things normally. I've been more honest with people recently and have been at equal intervals cranky and deep; I guess having cancer gives you some kind of get out of jail free card, for a while anyway. I guess that makes up a little bit for getting the bum end of the chance card, right?

1 comment:

  1. Several thoughts:

    1) Get the surgery you're going to be most comfortable with. If you will feel better about retaining your breast, keep it and have the lumpectomy. If you'll be paranoid all the time about the cancer spreading, have the mastectomy. Remember that your mental health will fuel your physical health.

    2)Don't worry about the family implications of the gene test. I THANK GOD I know I'm at higher risk because of my mom. I'm braced for impact, just in case. She had no one to provide that warning for her.

    3) Waiting blows. I'm sorry. I have no pep talk for that other than validation. Sucky.

    4) Get out jail free? YES, actually. You have cancer! That's terrible! You get to go to the front of the "World Owes Me Something" line! (just don't do the self-pity. downward spiral. not a good choice. trust someone who comes from a long line of depressives. nough said.) Be aware, though, that in about 5 years you may have to make up for some of the poor treatment you will be inflicting on your loved ones now, but I'm sure everyone can prepare lists of retributions for that time. (Does Gabe like Vegas? Let me know if you need help arranging some sort of vacation for him later on.)

    Lots of Love, Julie
    P.S. F*ck Cancer t-shirts have been shipped.