Medical Oncology Consult and CT Scan for Radiation Mapping

Today was a long, tiring one full of appointments.

First, I met Dr. Stilwell, my medical oncologist. I. LOVE. HER. She is kind and funny and spunky. She took a lot of time to explain everything I've gone through and what I can expect in the future, and drew graphs and charts to help. I was given LOTS of information, and some of it was new: Apparently, pathology discovered a tiny "satellite lesion" beside the main one. It's all good now since everything was removed, but that spread is enough to wig a person out. Still, I was reminded again that is what radiation treatments and hormone-blocking meds are for. We are going to kick this thing completely.

Dr. Stilwell performed an examination and was pleased with the way I've healed. I had a stitch poking out a little and stabbing me in the armpit and she offered to cut that off for me, which was amazing and that's one less thing to be a martyr about. They took more blood at this appointment because apparently there is so much they can learn from it to help determine the best course of treatment. Science rules. My next appointment with her is going to be in six weeks, after all the radiation treatments are done.

This afternoon, I had my CT scan so they could adjust the board I will lie on and map the exact places they plan to zap. There was nothing scary about this, just strange, as so many parts of this entire process have been. They took an image with normal breathing and then one where I held my breath for about 20 seconds. The doctors will compare those images to see if holding my breath made that much of a difference with heart placement. Yes, this is unsettling, but everybody keeps saying the benefits outweigh the risks, and I agree with them. With radiation, the cancer has a less than 3% chance of recurring. Without it, the percentage could be as high as 40%. So, yeah, go ahead and fire away near my vital organs for a few days.

Here I am, getting ready to go into the machine. We didn't end up choosing this board in the end because they didn't like the angle very much once they got me in there. (BTW, a dear friend's mother made the super cool mask and nearly every health professional I've encountered has been in love with it!)

Here's the board they actually ended up using. It's raised up a little more and is actually more comfortable. I hold my arms above my head and rest them in the purple holders. You can see the red laser line they moved around to get me lined up.

After the CT scan, I was given a tour of the treatment facility and shown how to scan my card when I check in each day (yay - I don't have to stop at the front desk anymore, and instead just march in like I own the place). 

The next step is the final "official" mapping appointment right back here in one week (October 6). They will have my blood tests evaluated by then so they will be able to specifically plan everything about treatment. SO. MANY. DANG. STEPS. The therapist told me that I will very likely start my first treatment the next day, on October 7. I am VERY HAPPY there is FINALLY a date for this! This means I'll be done by my birthday. Yippee!

Radiation Oncology Appointment (and some thoughts on survivorship)

Today, I met Radiation Oncologist Dr. Davis and his nurse Tonya. They are part of the team that gave me this afternoon's crash course in the radiation therapy I will soon have and everything that comes with it. I am not scared or particularly worried about it; I've heard there is often some discomfort and also fatigue, but that seems like it can be handled easily. They also told me I would only be on a 4.5 week plan of 21 daily treatments, which sounded way more promising than 6 weeks' worth of drives to Lexington. One interesting fact I learned about the treatments is that I will have to hold my breath for 30 seconds at a time while they are firing at me because that pushes the heart away from the chest wall and out of the treatment area. I got a whole handout on how to practice this prior to the CT scan. Big, fat, EEK on the necessity of this!

Tonya gave me this binder (I've been given many). It goes into more depth about radiation and cancer in general, and talks a good deal about survivorship, a word I hadn't really heard much until today. I'm not happy that I will now be worried about cancer for the rest of my life, but it's a thing and I suppose it's minor in the grand scheme; I DID get "out of this" for now with relatively easy surgery and treatment options. 

The next step is a morning appointment with my medical oncologist (the one who will oversee my hormone-blocking medication) and a CT scan, both on this Tuesday afternoon. I will have blood drawn and the CT scan won't involve an injection with contrast dye OR me drinking the gross liquid, thank goodness. The scan is just to help the doctors zero in on the exact spot they plan to treat. They will then draw a map on me with a special marker (NOT tattoos, as some of my friends have received during this treatment) and then cover those marks with special stickers that won't come off until I am done with all my treatments. 

The next exciting thing about Tuesday will be knowing the actual schedule for all the treatments. There will be a light at the end of the tunnel then, and I will be able to take steps to go back to teaching (in my new school and new district - finally).

the news you WANT

Kim, my nurse navigator, called this morning with some GREAT news! When it comes to cancer, any news considered to be great is definitely welcome (and often rare), so I started crying when she gave me the oncotype score. It is a 6 out of 100, meaning I do not have to endure chemotherapy (had it been around a 20 or above, chemo would have been seen as a potential benefit and would have been recommended)!

This is a stock photo, but I don't have an actual one of me jumping for joy, so it'll have to do. 

I am so happy that targeted radiation and oral hormonal therapy are the only other parts of treating this jerk cancer (I learn about these next steps this week and next). The low score also means the tumor was not considered to be aggressive and does not have a good chance at all of recurring. I am the happiest and most hopeful I have been since being diagnosed on August 4. Thank you, universe and people who pray.

Who knew getting such a low score on a test could mean such great things?

Post-Op Appointment

Today, Jon and I saw Dr. Craft (for one of the last times) at my check up. That's one of the weird things about this process - you get to know and really like your providers and then BOOM, they are out and new folks are in. I will see him in March, though, for my already-scheduled 6-month post-mammogram check up, so that's good. He calls the mammograms I'll have forever now "surveillance mammograms." 

All news is good, as I posted about on Friday. He confirmed the negative margins and negative lymph nodes and said it was about the best news we could have. The only thing he said he wished looked a little different was the tissue around the site he removed. But then he reminded us that is what radiation therapy is for - to take care of any possible weirdness left over that wasn't able to be detected through other means.

The incisions are healing great. He said 100% of patients develop a seroma where the tumor used to be, and just to call him if I experience any pain from that. He doesn't expect me to. It'll likely be gone in a month or two. 

He said I'll be on radiation treatments and hormonal therapy, and we don't know the time frame of these things yet until we talk to the two oncologists I will now see: Medical and Radiation. The radiation consult has already been scheduled for next week (I continue to love the snappiness of how this hospital system makes things happen)!

Still, the scariest part is behind me (unless I have to go through chemo, but we're not going there). Things are getting better each and every day. 

Some Test Results

I received some good news this morning: initial pathology reports came back to show that the two removed lymph nodes and also tumor margin were completely negative for cancer. This is a very positive outcome and was expected.

There will definitely be daily radiation therapy starting in about 4 weeks, and also years of hormone therapy. I knew this, so this is also okay.

However, the news isn't officially great YET. 20 years ago, my tumor's Stage 1 invasive status would have meant automatic chemotherapy following the radiation treatments. Nowadays, THANK GOD, the tumor is DNA tested (the Oncotype Dx test) for a recurrence score. Like golf, this is one score you want to be LOW. My score on that (which we will learn in about two weeks - you guessed it... MORE WAITING) will be the deciding factor about chemo or not. Here is more information on tumor profiling.

The medical team does NOT expect my score to be high enough to warrant chemo. However, they can't say for sure because, you know, they are scientists, and I am happy that they are. Scientists have saved my life.

Two weeks. Tick tock.

Surgery Day

Yesterday, September 3, I had lumpectomy surgery at Lexington Medical Center in West Columbia, SC. It was a day I was both dreading and dreaming about (dreaming about the getting it overwith part, of course). Everything was scheduled to begin at 10:30, which in reality ended up being closer to 11:30, but who's counting? I'LL tell you who's counting: someone who hasn't had any food or water since midnight, like a Gremlin, that's who.

This is us in the car moments before Jon dropped me off at the imaging center (step one of many for the day). Scared = understatement. I am so thankful he was allowed to be with me because he is my rock and I would have been a basket case otherwise.

In the imaging center, they put fresh-out-of-the-dryer blankets on me (LOVE - this happened throughout the day and I never knew how much I could truly appreciate a warm blanket) and then took photos at a mammography machine where I was seated. The doctor numbed me with my old friend lidocaine and then inserted and attached a wire to the biopsy clip that had been hanging out in my breast since the first biopsy. I was like a strange robot, although I chose not to look over at the weird wire. She then used the ultrasound machine to find the spot and draw a "map" for Dr. Craft with what I think was a permanent marker. Also strange, but hey, ANYTHING THAT HELPS, amiright? They taped a styrofoam coffee cup over the wire to secure it. This was bizarre but they said it works just as well as the $99 cups the medical specialty stores sell, so I went with it. A tech wheeled me over to nuclear medicine next.

Jon had been waiting in the radiology waiting room, and I knew I would soon get to see him for about 15 minutes, so I was super happy and calm to be in this different room. The only lousy part was when a doctor injected blue radioactive dye into my nipple 4 times. Yep. I was pretty glad when that was over. The tech held my hand during this procedure and joked that she wasn't there so much to comfort me as she was to protect the doctor from getting throat punched. I soon understood what she meant, lemme tell ya.

After the dye was injected, I had to do some shoulder exercises and massage it around to make sure it traveled up to the lymph nodes before she took the pictures. She got Jon to come in so he could hang while I did that. He also got to stay for the photos. Weirdest date I hope we'll ever have, that's for sure.

Here we are right before the photos she took of the dyed tissue.

Here I am in the machine where she took two 5-minute photos of the dyed lymph nodes. This was so the doctor would be easily able to locate and remove them for the post-surgery biopsy.

Sadly, Jon and I had to go our separate ways after the photos. He took this of me as I was heading into pre-op and as he traveled to the surgical waiting room.

Pre-op was what you'd expect, I guess. I climbed onto a bed and the nurses put on my compression socks, asked me a bunch of questions, took my vitals, and inserted the IV. I got more lidocaine before the IV insertions, which was comforting. I say insertionS because the first nurse tried on my meatiest vein in my elbow and could not get it to connect. OUCH! Then, a second nurse tried and it took a long time, but this one was in the top of my hand and with more lidocaine (thank you, lidocaine) and she finally got it to take. She legit said a little prayer after she had tried for a while, and then said "Thank you, Jesus" so I knew it was finally working. I was crying at this point, not so much because of the pain, but because I was terrified about what was about to happen. Then she held my hand (she also had tears in her eyes) and prayed with me and convinced me that God had me. Nurses are as wonderful in this way as they are in applying their extensive medical knowledge. She was the exact person I needed at that exact moment.

The anesthesiologist came in next and tried to convince me in his most comforting way that I would indeed NOT die on the table. That felt better to hear and I got a little more calm at that point, after the harrowing IV experience. 

Dr. Craft was next! I loved that he came in to greet me before I was under. He joked about some things and we laughed. He told me this would be a really easy surgery and I may not even need pain medication, although he would prescribe some anyway. Then he fist-bumped me, left and said "See ya in a minute!" I reminded him he'd see me, but I wouldn't see him. I'm sure he knows what kind of crazy he is dealing with when it comes to me, but he laughs a lot and I like a doc with a sense of humor, so it's all good. 

Two anesthesia techs came in next and I asked them if they could run the "cocktail" as they called it before they wheeled me down the hallway and they were happy to oblige. That calmed me down and I was ready for anyone to cut anything off of me at that point. Sign me up! These people know what they are doing. It was a party on a gurney.

There I went, into the room where Dr. Craft would be doing his magic. I talked to the team for a while and they put the gas mask on me. That's about it. I don't even know if they asked me to count backwards from 10 - I was out.

Next thing I knew, I was being wheeled into the recovery room, where there were about 9 other well-spaced patients in various states of consciousness. I was so confused! Wasn't I about to just get surgery? I'm supposed to be in the OPERATING ROOM! So, I asked the nurse a million probably incoherent questions but finally figured out I had indeed HAD the surgery and was awake and alive! WOOT! I took a brave peek into my gown. Yep. The deed was done. She gave me water and the two most delicious graham crackers I have ever eaten in my life, and kept fussing at me to slow down or I'd get sick. But I never did. Never have with anesthesia; I guess I am one of the lucky ones there. Now, my teeth WERE chattering badly, which is a side effect I HAVE always had with anesthesia. She gave me something to help fix that (I think) and I sat there for a bit before being wheeled to the discharge room. I kept trying to convince myself this wasn't a dream.

They got Jon! I could finally see him again! The discharge nurse read all my instructions and he remembered it all. She also sent them on a paper. I remember they were both laughing at me and I wish I could remember what I was saying to them, but maybe it's all for the best that I don't. Anyway, a different nurse helped me plop into a wheelchair and by the time we got to the hospital door, Jon was waiting there in the car. Surgery/pre-op took about 90 minutes, and we had been in the hospital about 7 hours. It was TIME TO LEAVE.

This is us before the ride home, holding the teddy bear that Kim (nurse navigator) had given me when I was prepping for the wire insertion. She suggested I stick him under my armpit for the ride home, but I didn't need to because the seat belt was on the opposite side of my incisions. 

I could barely keep my eyes open once I got home and remember that I was very talkative to Grandma Cathy and Jon and the boys, but I have no clue what I was talking about. A sweet band mom brought the MOST DELICIOUS chicken and noodles. That is a perfect meal for someone who's just had surgery. Everyone else in the family enjoyed it, too. Even Ethan.

Last night before bed, Jon and I were brave enough to take a look at the incisions (one in the armpit and another in the side of the breast). They look fantastic and I am not as worried about being deformed as I was before. Thank you, Dr. Craft and team!

Today, I definitely had a newfound respect for simply waking up. That's going to be a permanent, positive, and necessary change in me, for sure. And the pain isn't bad at all. The armpit incision is annoying enough to need Percocet, but I don't think I'll need any more after this morning's dose.

I'm so very happy to have this behind me. The anxiety I've lived with for over a month is almost all gone, because this scary step is DONE. Of course, the next thing to worry about is the pathology report, but I am going to get those thoughts out of my head as soon as they pop in... no need to think about it until I get the results call (by the end of next week). After that, I have a post-surgery consult with Dr. Craft the morning of September 14.

Thank you, friends, for reading my lengthy journey. And if you're reading because you are going through something similar, I hope my transparency can help relieve you a little, as did so many of the things I read from real women going down this road.

WE HAVE A SURGERY DATE! WOOT! (and a meal train, too - also WOOT!)

It's easier to include what I posted on fb last night after the appointment, so here goes:

Also, the very amazing band boosters have set up a meal train for us. I am overwhelmed with multiple emotions at the number of people who so kindly and generously and selflessly want to help our family get through this crap time. Here is the link, for all you very sweet folks who have asked.

I have this amazing and scary sense of calm right now. I know everything will be okay. It is wonderful to have a PLAN, finally. Bring on Thursday!