Lisa's F-Cancer Blog

I got a call from St. Clair this morning informing me that they’ve come up with my plan. Unfortunately, they can’t get me in this week, but on Monday, I’ll go in for my confirmation simulation. That’s where I lay (lie?) down for half an hour while they set everything up and make sure it’s according to plan. Then Tuesday will be my first radiation session.

I’m to check in at the desk Monday and sit in the waiting room until they call me back. But for my radiation sessions, I can just head straight for the changing room. I think they do try to make it as quick as possible, especially since they’re daily appointments.

The person I spoke with said she saw the note that I wanted to be done by my birthday. I told her I knew that was no longer possible. I think she was going to break the news to me before she realized I had already figured it out. Sigh.

I WILL be done by June, though!

Still no change in my taste buds. Goddamn.

This will certainly be an interesting May. It’s always been my favorite month. I love seeing everything blooming and looking so green. I love the warming temperatures. The smell of fresh air. Being outdoors again without freezing my ass off. And then, selfishly, all the celebrations: my birthday, Mother’s Day, and our anniversary.

But radiation will be a twist. Hopefully the side effects won’t be as bad as the chemo ones. I’ll try to enjoy the month as much as I can, while also hoping it passes quickly!

My post-op appointment was fast! I met with Dr. McAuliffe’s PA. The appointment would have been earlier but she was on vacation. She said I’m healing well. My next mammogram will be in February, and “then you’ll have a MRI every year for three years,” she said. I reminded her I can’t have a MRI. I don’t know if Dr. Brufsky will ask for anything else instead. In May 2024, I’ll meet with a nurse practitioner in Dr. McAuliffe’s office for a wellness check; they provide this service for three years.

My radiology pre-scan appointment was originally next week. I thought I started radiation right after, but discovered that it doesn’t start for a week to a week and a half after that appointment as the team has to meet and figure out the plan. So I got the appointment moved up to this afternoon. I’m already behind schedule and want to start radiation ASAP – so I’m done sooner, and posssssssibly by my birthday…

I wrote the above before my pre-scan appointment. Unfortunately, I won’t be done by my birthday. The doctor said I’ll get 20 sessions. Still, that’s better than the 30 many people get. The appointment was done in less than half an hour. They marked up my breasts, put stickers in certain spots, and I went in and out of the machine getting scanned. Then I got some very small permanent tattoos – just very small dots – to guide them for radiation positioning. An actual tattoo hurts more!

So now I wait for them to call me. Phase 3 is officially underway…

My eyebrows are slowly growing in, though right now they just look like gray smudges. I discovered if I wear dangling earrings, then my “hair” looks more like a badass lifestyle choice.

I know people have been curious to see what I look like now. Happy to oblige!

At high noon yesterday, my arm restrictions were lifted. In case you were worried, using it is just like riding a bike. It feels SO GOOD to be typing with two hands again!

This afternoon was the appointment with Dr. Brufsky. First, we met with his nurse Abby, who answered most of my questions.

When I complained about my bad taste buds, she said all chemo side effects are typically gone within three months. I’m hoping it’ll be more like two. Dr. Brufsky said if I still have them by the time I see him next in mid-June, he’ll be concerned. So I guess I have to grit my teeth and be (more) patient.

Abby explained the pathology, though it was information we already knew. My tumor was initially at 4 cm. At the time of surgery, there was a little bit of tumor left at 0.25 cm. It had a RCB (residual cancer burden) of 1, and no tumor in the lymph node. This is “really good news,” she said, which was echoed a few times by Dr. Brufsky.

Abby said I might be given a medication called Xeloda after radiation because of the residual cancer, but she wasn’t sure if Dr. Brufsky wanted to do this. Sure enough, he doesn’t think there’s a need because it would only add a very small benefit and there are side effects.

When I asked Dr. Brufsky about the chance of recurrence, he said it’s less than 10%. And if it comes back, it’ll come back in the next five years. But he doesn’t think I need to worry because the cancer was almost all gone, etc. Aaron reminded me that this percentage includes people with a lot more risk factors than me.

I asked if he had any estimates on how much radiation I’ll need. He thinks 15-20 days of treatment. That would be less than I was expecting; I hope he’s right!

Scans aren’t routinely done unless there are symptoms. They often wait six months after radiation since the tissue can change. I’ll have one mammogram a year, and visits with Dr. Brufsky every six months for the next few years.

Dr. Brufsky is pretty sure my DVT is from the surgery. He wants me to see a benign hematologist since he doesn’t think it’s related to the cancer. I can talk to this doctor about the side effects and stuff. When we got home, I called the person he recommended. His first available isn’t until – ready for this? – January 2025! Hopefully I can get in with someone else in the practice sometime this century!

When we were checking out and scheduling the next appointment, I saw Roseann, one of my favorite chemo nurses. She didn’t even recognize me with my “hair.” She assumed I was going to dye it (since it’s mostly gray right now), and I said absolutely not! Of course she asked how I was doing and even asked after my parents. It was great to see her and the other office staff I’ve interacted with – all of whom were really friendly and happy to see me looking better.

Next Thursday is the post-op appointment, and then on the 25th is my radiology pre-scanning appointment. As Dr. Brufsky said, the worst is over. It’ll sink in once the taste bud stuff is gone (am I sounding like a broken record yet?)!

My stitches look good and a lot of the glue has come off. The inked “yes” by my port site is gone. I still feel pain by the side of my breast/my underarm, but it has already lessened compared to the beginning.

I was switched to a new blood thinner medication due to the nausea, but then had a rapid heartbeat, so I was switched back. The nurse said the second medication doesn’t cause that side effect, but this is me we’re talking about!

I realized the other day that I screwed up the dosage. I was supposed to take two pills twice a day for 6 days and then drop down to one twice a day. At some point, I forgot it was supposed to be two and only took one from then on. I think it’s because it looks just like another medication I take only one of. I checked with the doctor and am staying the course.

What I’m having the most difficulty with right now is the yucky taste in my mouth, which – even though I’ve had it for months – is now making me sick to my stomach. It’s been 6+ weeks since chemo. Argh!

On the plus side, if I use a little gel to stop my hair from looking like I was electrocuted, it covers my head and doesn’t look half bad. I prefer it to any head coverings, but unfortunately still get cold, so sometimes I have to give in because it’s pretty thin. Warmer temps are coming this week, so maybe I can go free again!

It was great having both sets of parents here for Passover. Now Aaron is doing our taxes and Doran is working on an incredibly difficult puzzle I have zero interest in. Two more days of killing time by myself, I mean, two more days until I can use my arm normally (and go back to work!)!