March 30, 2016

You're still here? I can see it every day in my co-workers' faces. It's like when you're pregnant, only nobody is going to playfully ask "hey, shouldn't you have had that cancer surgery by now?"
Wow, has it been a long while. We've been waiting for the genetic test results, and holy crap did they take a long time.
The surgeon was out of the office on Monday, and it turns out the oncologist is out all this week. Huh. That's nice, since the test results are going to be emailed to him! After a couple days of increasingly desperate and teary calls to the Cancer Center, they call the testing company and ask that the results be faxed over so I don't have to wait any longer.
They're negative! So it looks like my surgery will be a lumpectomy. I got the first available appointment with the surgeon (Friday morning, ugh!) and am hoping to get this show on the road next week.
I also called up to the University of Wisconsin Carbone Cancer Center in Madison and scheduled a second opinion. So Jeff and I will head up there Monday morning to meet with a badass-looking lady surgeon and possibly an oncologist.
I was really impressed with how fast the UW people "mobilized" (for lack of a better word) and got me in ASAP. I do like my FHN surgeon and oncologist, but let's be honest, here - they've let me dangle in the wind with no clear plan for what, almost 3 weeks now. And yes, if you look at the UW website, they have a whole patient navigator team, which isn't possible for a small place like FHN. But as much as I like FHN and its people, I kind of like having a person whose job it is to make sure I'm not dangling in the wind. So we're going up to Madison and we'll see what happens.
Not too long after all the appointments fell into place, Jeff got us tickets for the next installment of Rogepalooza - Mute Math at the Majestic Theatre in Madison on Saturday. I'm really looking forward to it. I feel like we have made some progress and are doing something about the cancer.
It's been a pretty crappy time lately, and I keep thinking that yeah, waiting is bad but wait until chemo or radiation or surgery ... I'll wish for the days when all I had to do was wait. I'm trying to be as calm as I can; it's just been difficult lately.

March 25, 2016

Yesterday, we had a little break from cancer. And poor Jeff only had to have his eye lasered to make it happen!

As we were eating supper Tuesday, Jeff remarked that he was seeing "floaters" in one eye, and that they weren't going away. Being, well, me, I remembered when one of my friends at work had to drive her daughter to Madison to take care of a detaching retina. It was an all-out eye emergency, and I remember my friend saying she was so glad she had taken it seriously. I shared this story with Jeff and, being the calm guy he is, he said he'd go see a ophthalmologist the next day. I looked up the doctor's office number and texted it to him, just to make sure.

So he called Wednesday morning and after some referral nonsense, he got an appointment for later that afternoon. He'd take a short day at work and come home for the appointment, and I'd see him after he got off work.

When I got home, there was a text on my phone - he had a retinal tear, and we might be headed to Rockford or Madison that night to get it fixed. I packed us a suitcase, but by the time I was finished, Jeff was home with an appointment for the next day with a retinal specialist in Berwyn. I emailed work that I wouldn't  be in the next day, and we got ready to leave early in the morning for his 9:30 appointment.

He did, indeed, have a retinal tear - the doctor said it was actually two small holes. Yikes. No big deal, though, apparently - he would laser the holes to close them up and see Jeff back in three weeks. 

!!?? I would call that surgery, but apparently it's a minor procedure. The nurse walked us back to the procedure room, got Jeff seated in a chair and gave me a pair of glasses to wear while the doctor lasered my husband's eye.

There is literally no recovery time when a doctor lasers your eye. Jeff drove home from his appointment. Well, he drove to Rockford, where we had lunch and some beers at Old Chicago. Crazy. They (Old Chicago) have some sort of partnership with Generations brewery here in Freeport, and they had a very good beer made with lemon and marshmallows. We liked it so much, we stopped at Generations and got some growlers!

We talked about our vacation plans, and about some shorter-term plans (back to Old Chicago this Saturday for some basketball!), and just generally had a good time. We talked about our concert plans - if all goes well, we'll have seen 27 bands before Summerfest this year. (Last year, we had seen 10 bands before Summerfest, and ended up seeing a total of 52 bands, so we've got a goal to exceed that number this year.)

Right now, cancer is a scary thing, but it doesn't feel real. I'm sure it will feel real soon enough, after surgery, chemotherapy and more. But we're making plans. I might not be dancing around, but having cancer isn't going to keep us from having fun and doing what we love, together.

March 23, 2016

Surely, I'll get some news today, right?

I hold off until the afternoon to send a message to my surgeon's nurse, asking about the biopsy results.

Her chilly reply is that the doctor will be out for a long weekend until next Tuesday; "we'll be in touch" then to discuss the next steps.

Oh, hell, no. I call the Cancer Center and explain my predicament. They take my phone number, and within an hour, my oncologist's nurse calls me back with some news - the right breast biopsy is negative for cancer. 

We still don't have the results of the genetic tests, and I'm just going to assume that no one with a medical degree is going to do or say anything until those are back. And hey, my surgeon isn't around until next Tuesday, anyway!

March 21, 2016

Things not to tell your patient after you've canceled her surgery and before you order a test where you won't know the results in less than a week:

Your biopsy also told us how fast your cancer cells are growing. If the abnormal cells are growing any more than 10 percent faster than normal cells, that's something we would normally take a look at. Yours are growing 60 percent faster than normal.

Also, please be aware that all the things you're asking about as you're checking them off on your list:

Any bone pain? Swelling of lymph nodes? Unusual tiredness?

Your new cancer patient is going to be hyperaware to the point of obsession with any twinge or ache and her levels of tiredness until ... well, I'll let you know when it stops.

March 20, 2016

I’m back home after taking care of my mother for a day while her nurse had to attend a funeral. Mom needs round-the-clock care, but not difficult care - basically, make sure she doesn’t get up out of her chair without assistance, and some help with toileting and dressing. I’m glad to be able to help Mom. We aren’t telling her about my cancer. 

Tomorrow, I’ll tell the office that my surgery has been postponed and my schedule is back up in the air. Part of me is relieved - it will give me more time to get stuff done and prepare people to cover my stuff. I’m also anxious to hear some results, and to get the surgery scheduled, whatever it’s going to be.

March 16, 2016

The biopsy on my right breast hurts - it’s closer to my chest wall and requires extra lidocaine, so I’m feeling kind of beat up when I go for my appointment with the oncologist. My breasts are wrapped tight, so the nurse doesn’t have me gown up to see the doctor - they don’t want to release the compression on my fresh wound. 

One of the very first things the oncologist says is that the lumpectomy scheduled for the next week is going to be cancelled. We need to wait for the results of the second biopsy, which should take 3 -5 days, and for the results of the genetic testing, which should take 7 - 10 days. If the results of the genetic tests are positive, he’d recommend a bilateral mastectomy to greatly reduce my cancer risk. 

Having triple-negative breast cancer, he tells me, means that I’ll almost certainly need to have chemotherapy. We talk a bit about the schedule - whether I’ll be able to go on our big planned vacations for the year, to Panama City Beach in April and with the whole family to Summeriest in July. 

I’m kind of pissed, frankly, that they’ve taken away my surgery date. That surgery will tell me if the cancer has spread to my lymph nodes and give me more information and a slightly firmer timeline. But it’s cancelled - twice, actually - the nurse who draws my blood tells me she has already called the surgeon’s office, and while she’s drawing the blood, another nurse pops in to tell me that she’s called the surgeon’s office to cancel the surgery.

So, no answers for me, for the foreseeable future. 

March 14, 2016

At work on Monday, it’s time to tell everyone. A few people know - my bosses, and another two co-workers, because I texted or emailed them on Friday. (They knew about the biopsy and the Friday appointment.)

It’s weird to talk about your breasts with your co-workers. 

Because I’m me, I want to schedule the genetic testing ASAP. I call the Cancer Center, and the receptionist there hesitates, saying the surgeon should probably be referring me. In the meantime, I get a call from the nurse navigator again — in light of the diagnosis for my left breast, everyone (the surgeon, the radiologist and my primary care physician) wants to do a biopsy on the right breast. Does Wednesday work? Oh, and she’ll call the Cancer Center and arrange for the genetic test.

Later that day, I get a call from the Cancer Center — I’ll meet with the oncologist (who is also the person to talk to about genetic testing) on Wednesday after my other biopsy.

I’ve already booked a short week at work (Thursday and Friday off for basketball!), so I spend the days getting everyone prepared for me to be gone at least 2 weeks beginning the next Wednesday after my surgery.

March 11, 2016

An appointment with the surgeon - finally - and I have cancer. Dr. Barnes speaks quickly and quietly, so it’s all kind of a rush. I hear “triple-negative” and “typically aggressive but treatable” and he explains the options from here: A lumpectomy (his recommendation) or a total mastectomy. He’ll also take some lymph nodes to see if the cancer has spread. Oh, and he highly recommends genetic testing to see if I have the BRCA genetic mutation that puts me at higher risk of developing breast and ovarian cancer.

Pretty soon, the nurse is in the office. The earliest available surgery is March 17. “That’s St. Patrick’s Day,” she says, but I look at Jeff and kind of smile. We’d discussed this before. He had even said that he thought he’d be watching the first round of the NCAA Tournament by himself in a hospital waiting room, while I was in surgery.

Nope. We’ll have our two-day beer, fried foods and basketball fest. We schedule surgery for Wednesday, March 23. 

After the appointment, Jeff and I go to Benchwarmers for lunch. I need a drink, and we need to figure out how to tell everyone. We’ve got the weekend, and Tom wants to come home from Cornell with his girlfriend. 

I don’t know how to do this - Jen has known about the biopsy, and she knows about the appointment, so I’m sure she knows that I would text her and tell her if all is clear. But I don’t want to text her and tell her it’s cancer, either. So I kind of ham-handedly call the school and ask that she be dismissed early for a family emergency. When we pick her up, she gets in the car and says, “So, it’s cancer.” She’s pretty matter-of-fact, and no, she doesn’t want to go with us to pick up Tom. So we take her home and head west. 

I don’t want to tell Tom in front of his girlfriend, so I text him that we’re on our way and that I’d like to have a few minutes with him by himself. He’s immediately asking what’s wrong, and I end up telling him to just wait until we get there. It’s not a bad drive to Mt. Vernon - the sun is shining and we’re listening to music by bands we might go and see.

I tell Tom (awkwardly) in the parking lot behind his dorm, before he goes up to get his girlfriend and their stuff for the weekend. He doesn’t have much to say - he knew it was health-related, because he asked if it was about my doctor’s appointment.

Tom and Jen have been through this before. They lost their young stepsister to neuroblastoma a couple years ago. I wish I didn't have to put them through this.

It’s a pretty calm weekend - we’re all just enjoying hanging out together. I take Tom and his girlfriend back to Cornell on Sunday, and enjoy listening to the alternative 80s station on the way home, blasting the Go-Gos, The Clash and Big Audio Dynamite.

March 8, 2016

OK, I’ve waited long enough. I went in for a biopsy of a spot on my left breast on March 3, and it’s been four working days. My results should be back. Jeff has more or less taken the day off, and I’m working up until the time of my appointment with the surgeon. But his office calls that morning - the results aren’t back yet; don’t bother coming in. Would Friday work OK? 

I don’t know what to do - should I stay at work like nothing has happened? I haven’t been able to focus since they told me I would need a biopsy.

I call Jeff and tell him the appointment is off, and that I don’t know what to do. He says he’s going to take a shower and get ready for work, and we can play it by ear. I go back to my desk and try to concentrate, but I’m shaking and nervous. Forget it - I’m taking the rest of the day off.

It’s beautiful outside. When I get home, I decide ’m going to open the windows and enjoy the day. No, even better, I’m going to spring clean. Poor Jeff comes downstairs in shirt and tie while I’m cleaning out the cat box. 

Soon, he’s in sweats, too, and helping me move the furniture in the living room. The rug, I’ve decided, smells bad and needs to go. He rolls up the rug and helps me move the furniture around so I can clean the hardwood floor in the living room, all the windows and the front door open. When we’re done with our spring cleaning, we’ve got a new rug, a sparkly clean floor, a dusted entertainment center and I’m happy. For the next few days, I’m pleased just with our “new” living room.

February 26, 2016

I’ve waited so long to go in for a six-month follow-up mammogram and ultrasound on my right breast that the doctor’s orders for it have expired. So I had my doctor re-do the order, and went in. Since it’s been 10 months, the mammogram tech asks if I’d like to go ahead and get the left breast imaged, as well, since it’s close to a year since my last mammogram,

So after we get the orders corrected, she images both my right and left breast, and ushers me across the hallway to the ultrasound room. They are “keeping an eye on” a spot on my right breast, so I’ll have an ultrasound and mammogram every six months of that breast. The ultrasound tech images both breasts - the mammogram had revealed a spot on my left  breast that hadn’t been there before.

When you have a mammogram and ultrasound appointment at the same time, you get to see a radiologist, live and in person, to deliver the “all’s clear.” So after she’s finished with the test, the ultrasound tech goes out to get the radiologist.

The first indication that something is wrong is when the ultrasound tech comes in, followed by Jen, the nurse navigator, and the radiologist.

Now, I’ve done enough informational pieces and stories on the Women’s Diagnostic Center to know that they bring Jen into the equation when further testing is needed.

They’re concerned about the spot on my left breast. Can I come in for a biopsy the next week?