Well hello there!
On Sunday, we checked in to a new hotel. Oh my. SO. MUCH. BETTER. I don’t feel like we are trapped in a dungeon. It is a little more expensive per night, but it is walking distance to our appointments so we don’t have to pay for parking. Complete win.
Today, we spent most of the day working at the hotel. It was good to have some uninterrupted work time.
We headed to the hospital in the afternoon for one of two appointments. First, we met with the social worker. We actually met her briefly last week. This was a follow-up so she could give us some kid packs. There was a DVD that the kids can watch that explains cancer, how treatment works and has a section with kids asking questions about all of it.
They also gave us a handy dandy backpack for each kid that held a little MD Anderson stuffed monkey, bracelets, a little chest and some paint to decorate the chest.
So, the bracelets were pretty neat because each color represented an emotion: sad, worried, angry, happy, loved.
So when the kids are feeling one of those emotions, they can wear the appropriate bracelet (which that has the emotion words on the inside of the bracelet so others can’t see it) as a private sign to us. There is also a set of bracelets for Alan and me so we can show that it is healthy for us to have these emotions too.
She also gave us a little treasure chest, paint and some strips of paper that say, “I feel _______ because _______.” The idea is they can decorate the chest, and as they begin to feel emotions, they can write them down and put them in the chest. This will allow them to get it out, but not have to deal with it all right then.
Some pretty good ideas, assuming Bryn doesn’t just want to wear all of the colored bracelets at once for a fashion statement. That’s a big assumption.
On to the oncologist …
The oncologist said that we will still do the sentinel node test during my surgery, as we expected. They will be able to give me a preliminary result at the time of surgery; however, it may take a little time to get the official results on whether it has hit them.
From there, we send my tumor on for an OncoDX test. This test looks at the actual genes in the tumor (their level of activity/growth), and it does some crazy calculation to produce an individualized recurrence score. This score tells us the likelihood of recurrence and if I would benefit from chemotherapy.
My interpretation of her explanation is this: The results of this test on the tumor will tell us if I have a low, medium or high likelihood of recurrence. If it is low, then the percentage of recurrence isn’t high enough to risk the side effects that chemo can have (slightly elevated risks of leukemia, heart damage, etc.); however, if it is medium or high, the scale will tell us if it makes sense to have chemo.
She predicts that I will wind up in the medium category. Based on my age, being in the medium category means she would recommend chemo. But, if it is low … no chemo!
To be honest with you, I dread the idea of chemo, but now that there is a slight chance I won’t have to have it … well, I dread that too. What if it is elsewhere?
So, I will see her again sometime after my surgery. She will write her recommendations for chemotherapy that I will give to my oncologist in OKC.
Oh, and she gave me a good recommendation about the surgery.
I’m still conflicted about whether to do a single or double mastectomy. The doctors here are not recommending a double mastectomy — the surgeon basically doesn’t want to do unnecessary surgeries unless it helps the patient sleep at night; and the oncologist says that it would prevent new cancer, but the current cancer is being handled with our planned treatment.
While discussing my anxiety of the potential to not have chemo combined with the idea of leaving one side, Dr. Moulder recommended that I do a single mastectomy right now, then if I decide I want a double, I can do that at the time of reconstruction.
That’s smart. Why didn’t I think of that? That gives me more time and more information. That’s my plan.
Tomorrow, I meet with the plastic surgeon first thing in the morning. From there, we will meet with the surgeon to firm up our surgery plans.
This is it, folks. We are on the road to recovery starting……NOW.