More breast cancer talk

This has been a rough weekend. I still have regular panic attacks and Lisa is visibly upset about spending another Mother's Day without her mom around (she died in 2008). It is a bittersweet holiday for her, that's for sure. Plus, even though we beg and plead with the kids to JUST BE GOOD on Mother's Day (we don't need any gifts, we just want a peaceful house, please!!), they can't seem to handle the pressure and actually seem to behave even worse on this day. Ugh.

I have been thinking a lot about my diagnosis and also how I am processing it. I know there are several different things at play here. I will admit that some of them are selfish. But's that's the way it is, isn't it?

1. I spent 9 weeks being led through a medical experience that involved a dozen appointments, eight doctors, lots of invasive tests, surgery, and waiting for a conclusion. The journey itself was quite traumatic.

2. I spent over 5 weeks as a cancer patient. I had to wrap my brain around that diagnosis and be able to come to terms with it. It is a life changing event. Then, without warning, I no longer have cancer. It's all over. You can go home now. Um, ok.

3. For awhile I was a cancer patient and now I'm not. This is the selfish part of me talking. I was special for awhile. My friends were super nice to me. I had the support of hundreds of people. I could wear a little pink ribbon and talk about how I, too, had breast cancer. (Although I never did. Wear the pink ribbon, that is.)

4. I have only had surgery a few times, but I tend to feel let down afterwards. It is such a cool experience, and then it's over and I have to go back to my daily life.

5. I am not sure how much I trust the medical community at this time. I was all rah, rah for awhile. They saved my life! They're looking out for me! But now, I realize that while everyone was trying to do their best by me, they can still get it wrong. The radiologist couldn't get a sample on the first try, which resulted in a surgery that never transpired and turned back into a regular biopsy. Then, two pathologists read my initial biopsy out wrong. Two of them! Or did they? Maybe the third and fourth pathologists were wrong. Whom do I believe?

6. I'm a little scared. I might not have cancer now, but I have a 4-6 times higher risk of developing invasive breast cancer than the average population. This translates into about a 25% chance in the next 15 years. That's really high, isn't it?

OK, I know this is totally whacked and thousands of cancer patients everywhere would give anything to change places with me. By writing this in a public blog, I am taking a bit of a risk here that everyone will see me for the attention-seeker that I really am. But sometimes you can't help how you feel, right? And by writing this down, hopefully I will get over these feelings sooner. I am a flawed human like everyone else out there. I think I am just a little more vocal about it.

So what now? Well, I have my follow-up appointment with the surgeon tomorrow. Also, I wrote to a breast cancer expert at Johns Hopkins and this person said I should absolutely keep my appointment with the oncologist. The one thing I can do to lower my risk is take Tamoxifen, so I need to talk about that. I also need to get a plan for monitoring. I'm not sure who will be in charge of my future breast health. The surgeon? The oncologist? My family practitioners? Also the expert said I should consider having the slides sent out to a pathologist group at Vanderbilt University. This group is considered the national expert in the fields of ADH (atypical ductal hyperplasia) and DCIS (ductal carcinoma in situ). My understanding is that it can be very difficult to distinguish between the two (obviously). I may feel a little better if I do get one more opinion.

I am healing, physically and emotionally. My incision feels pretty good, although it did remind me it was there after I played soccer this morning. And I am starting to be able to talk about this last week without tearing up. I am not yet celebrating like I should be (and like everyone else is), but I know that time will come.

I will  probably keep up with the blog. I get 80-100 page reads a day, so obviously people are still interested. And I enjoy writing it. I still want to write a breast cancer summary because I think that many people don't have enough, or the right, information. That will be a future blog entry. I also have a few more appointments in the near future, so I will write about that. Otherwise, I need to find a new focus. Or not. I would like to feel like I am helping the greater community in some way by sharing my life. But maybe I'll just write about my day, and if people want to read about my mundane life, then so be it.