Laurie White’s Blog

They came to get Laurie about 20 minutes ago for surgery, and the status board shows her in the OR. I ran into her surgeon in the waiting room when he finished talking to the family of the patient he had just finished. He said he wasn’t at all tired, and felt great (after I asked him). He estimated about 90 minutes for the surgery, so expect the next update after 3:00 eastern time.

Charlie here. We’re at the hospital, waiting for Laurie to go into the operating room.

It’s been a very slow morning. We got to the Ambulatory Surgery Center at 7:45 and checked in, and were told “you should be down at the other (main) surgery center.” We explained that we’d been told emphatically several times where to check in.

They thought about it, and said that we should go straight to the Breast Center (in the Ambulatory Surgery center). We walked there, and were told we should check in at the front desk first. We said we had, and had been sent forward.

Finally, the main nurse there, Wanda Register, came out, and straightened everything out. She’s fantastic; problems and confusion just melt away when she gets involved. Laurie went back to get a needle inserted to guide the operation.

But that took a long time, because they couldn’t find where the lump had been. Chemo had completely removed it. (What a terrible problem to have!) They finally turned the mammogram machine upside down to get a better angle, found it, and inserted the needle. Laurie says that, for a while, she thought they were going to turn her upside down.

At which point we had to travel a block to the main hospital. They had an orderly drive us over. At the front desk, they told us to walk on up to the pre-op area, where they were a bit shocked that Laurie wasn’t in a wheelchair, or even accompanied by staff.

But since then, everything’s been good. She’s all wired and tubed up (even with pneumatic leg massagers for during surgery to make sure her circulation stays good), and been given Valium. She faded out a bit, but just checked her e-mail to see if there’s anything she had to take care of before surgery! She asked me to post this update so everyone will know what’s going on.

Laurie’s surgeon is doing a complex procedure now, so we will probably have to wait at least an hour longer before she goes in. I’ll update everyone when that happens.

P.S. I just read this to Laurie, and she just wanted me to note for the record that the damn needed hurts. She strongly recommends not having a six inch needed inserted into your breast. Or anywhere else, actually.

Okay,

So I figured I’d have surgery this Friday.

But I figured wrong.

Seems when my oncologist’s appointment person called to set up surgery, she just set up a lumpectomy. And lumpectomies can be done in the Surgical Center. And you can go home the same day.

But, since I had cancer in my sentinel lymph nodes, I also need to have some lymph nodes under my arm removed to check to ensure the cancer’s gone from there. This is a much bigger deal. You get drains put in. You have to spend the night.

And you need to be in a different operating room. One that my surgeon doesn’t have access to this Friday.

But he does have access next Monday, so that’s when I’ll have surgery. At least, that’s what I’m thinking now.

Actually, this is just fine. I’m quite glad to hear they’re checking if the cancer is spreading. It gives me one less thing to be paranoid about.

But I had to explain all this to Charlie as he was preparing for his colonoscopy. He always told me I was being a very good patient and he’d be a million times worse. He was right. But it turns out he had nothing major found and the minor thing they found may not be a problem at all (we’ll know after the pathology report, but it’s a question of whether he needs to be retested in 5 or 10 years). And Charlie decided the procedure wasn’t bad at all. The sedatives they give are good.

But I had so much fun going to the Napier Building/Breast Center and not being the patient!

I’ll be doing preop Friday (I think…I let Charlie answer the phone while he was still on sedatives and that’s the message he got). I should know more then.

So, we met with the radiation doctor and my oncologist today and have decided to go with a lumpectomy.

Am I really surprised two non-surgeons would suggest nonsurgical approaches? No, but it’s good to know that going with the smaller surgery isn’t crazy. Especially since Dr. Burns, the oncologist, is going to be the one to handle the follow-up after surgery and radiation are done.

We’ve even got an appointment for the surgery. It’ll be 8 days from now, Friday, March 24. I see this as a good omen…it’s the drop deadline for spring semester. I had my lymph node biopsy and port insertion on the drop deadline for fall semester and it went well. When that’s healed “enough,” I’ll go back to the radiologist’s and get initial work/measurements/etc. done. Then 6 weeks of radiation 5 days a week and then it’ll all be done.

Except for the monitoring for the rest of my life. And removing my ovaries (my genetic defect causes a much greater risk of ovarian cancer and there’s still no good way to monitor for that).

But I’ll worry about all that later. For now I’ll just be excited/happy/contented to know what the next step will be and when it will happen!

It’s Charlie’s 50th birthday today. And he claims he’s going to be happy spending it going to doctors’ offices with me.

He’s really special.

I’m really lucky.

Ah. The good news from last Thursday is that my blood work showed that my immune system was well enough to eat fresh food again. Since Charlie had to miss that appointment, I brought a copy of the results to him and he checked all the numbers out and even he agreed.

So I’ve spent the time since then enjoying salads, fresh salsa at Caliente’s, and fresh, cold, crisp baby carrots (with just a touch of creamy Italian garlic dressing)–tonight’s dinner.

But I’ve learned to appreciate the little things, like baby carrots.

And they haven’t killed me!

(Whenever we’d go out during chemo, I’d kiddingly ask for a salad and Charlie would agree, “Sure, you can have one, but wouldn’t it be embarassing to die from a salad?”)

Damn!

I was so looking forward to today’s appointment with the surgeon. We’d be one step closer to getting this over with. But noooo. He saw the genetic testing results we brought and said I had three good choices…a lumpectomy, a mastectomy, or a double mastectomy.

Give me a hint doc. Which is the best?

But he’s not picking one. It’s up to me. So, I’ll see a radiologist to discuss radiation options (maybe I won’t need radiation if I have a mastectomy, but just maybe) in the next few days. And then decide.

Charlie and I have pretty much decided a single mastectomy is out of the question. If we’re afraid enough of reoccurrence, it could happen in either breast. So that leaves either the small or extra large options. And when surgery’s concerned, I think I lean to the small, but we’ll talk to the radiologist.

But, the good news is whichever we pick will be a good choice. At least in my surgeon’s opinion.

Hmmm, is this good or bad news?

At first glance, it looks like pretty bad news. I mean, a big bold letters that say Positive for a Deleterious Mutation can’t be good. I mean, I did antonyms and know “deleterious” and “good” are pretty much opposites.

But I got the results of my genetic testing and they had that title and it really doesn’t feel like bad news. It’s information about my breast cancer and information is good. It goes a very long way toward explaining why I got cancer in the first place. (Apparently a lot of cancer patients spend a lot of time wondering “why me?” Given my family history, I sorta knew why me. Now there’s no doubt.)

Officially, there’s it’s a germline BRCA2 mutation 2024del5, resulting in premature truncation of the BRCA2 protein at amino acid 599. On average, among those with this mutation, there’s an 84% risk of breast cancer by age 70. Of course, I have a 100% chance…

Okay, so as Charlie says, this says I’m defective, but it’s not like this is any news. And it gives us great information to make decisions with the surgeon tomorrow.

So let’s just assume that this is good news.

Okay, so during my trip to Houston during the last week for the SIGCSE and AP Test Development meetings, I learned that some of those silly songs we learn in elementary school may really make sense. No, I didn’t see an itsy, bitsy spider. INstead, all week, I had the words:

Whenever I feel afraid,
I hold my head up high,
And whistle a happy tune,
And no one ever knows I’m afraid.

No, I wasn’t afraid of Houston (even though the airport is named after a President Bush). But I spent a lot of time trying to convince people that I was well and strong. First it was Charlie, to convince him I was well enough to go in the first place. Then it was everyone else. And durned if I didn’t end up pretending so hard that I was strong enough that I ended up being strong enough. Or, as the song says:

The result of this deception
Is very strange to tell
For when I fool the people I fear
I fool myself as well.

It was a very good trip, but it’s very good to be home.

Okay, so airline pretzels, turbulence, and chemotherapy don’t mix as well as I’d like, but other than a little queasiness, the flight to Houston was fine. Was on-time for the first time all week too! (Being married to a frequent flier means I have all sorts of information at my fingertips. Of course, when I called him after landing, Charlie swore I was still in the air, according to the WWW site he was tracking me on. So he may not know everything.)

The first day of SIGCSE has gone quite well so far. Nice keynote, good sessions, a great chance to catch up with lots of people. I may know 200 to 300 people here.

But the surprising thing is that of all the people I’ve talked to so far, if they didn’t know I was sick, no one suspects anything is wrong with me.

I don’t think it’s that I want pity. But still, I was a bit surprised no one mentioned my hat and asked what happened to my hair. When I asked someone last night why he thought I was in a hat, he said it looked stylish. I think that may be what bothers me about the reaction (or lack thereof) I’ve received here. When you think of me, “stylish” and “fashionable” are not the first words I expect anyone to come up with.

Of course, the good news is that I must be doing pretty durn good. I mean, everyone sees me as plain old Laurie.

And that’s pretty durn nice.