Vacation, Radiation & Scans

My lanta y’all. Ever since we got back from vacation, I have been feeling quite overwhelmed from a multitude of appointments that keep changing dates/times—it seems like every day! So let’s start off by going back in time, though, to a simpler time—vacation!

Mitch, myself and the dogs went to Cincinnati for an extended weekend. We drove and stopped in Peoria, Illinois, overnight on the way. While this saved us money to not have to board the dogs, it was quite grueling (even if Mitch drove most of the way). The truck just wasn’t comfortable. If road trips are going to become long-term things for us (and we have both dogs) I think we should get an SUV to be more comfortable—like we don’t have enough high ticket items in our lives right now! Instead of typing out a novel about our time, I’m going to utilize some pictures. ENJOY!

Radiation

Now that the fun is over, let’s talk appointments! The first appointment I had when we got home was at the med center (UNMC) with a radiation oncologist named Dr. Wah. This was a consult appointment to help me determine if I want to do my radiation in October with the med center. I will meet with Methodist’s radiation oncologist next week to compare and decide where I want to go.

Going into this appointment with Dr. Wahl, I was a bit nervous because of a pesky thing called Facebook. See, I had joined some Facebook groups specific to inflammatory breast cancer. These groups seem to be very biased towards everyone going to one of the two or three inflammatory breast cancer clinics in the nation, the best being at MD Anderson in Texas (which I personally don’t have much of a desire to go to). Not wanting to go to MD is for a multitude of reasons, but the biggest one being the fact that cancer care is supposed to be pretty standardized nowadays; so I don’t understand what MD Anderson could offer me versus the health institutions more local. How would MD Anderson differ in care?

With this confusion, I had reached out to the groups and asked what is different at MD Anderson versus where you received treatment prior? I was disappointed as no one was able to give very many specific answers. Most were “they are the experts. they know best.” This notion of “they just know best” doesn’t really jive with me. What do they know that’s different? What specifically are they doing differently that isn’t being done here?

Luckily for me though, a few people followed directions mentioning specifics such as: “MD Anderson has more studies and has implemented doing radiation twice a day,” compared to the once-a-day now for IBC patients. This news made me nervous going into my first radiation doctor appointment. Would he know anything about inflammatory breast cancer? What about this MD Anderson protocol? This Facebook group had me convinced that Dr. Wahl would know nothing of IBC and I’d have to make a trip to Houston.

At my appointment, it turned out Dr. Wahl does know both about inflammatory breast cancer and MD Anderson—in fact, he brought up MD Anderson before I even had a chance! He brought up the twice a day radiation and left that decision in my court, but basically said he wouldn’t do it if it was him. There is apparently no real evidence that double-day radiation makes a difference so why do that to the body? Plus, with no real evidence insurance is likely to put up a fight and not approve it, leading to not paying for it. He explained how he would target a large portion of my chest and all the lymph node areas that were removed in surgery, out up to my throat (it may even catch part of my throat). He explained how I’d have to do 6 extra rounds of radiation, just to my scar because IBC patients have high reoccurrence in that area. He explained he fully expected me to have skin side effects because the dose of radiation will be high (due to the IBC), but he has developed his own treatment to help alleviate the pain associated with it.

I left that meeting feeling confident in Dr. Wahl. He has obviously done his research and continues to stay up to date on the latest in patient care. But it didn’t stop me from actually calling and speaking to MD Anderson. They basically said that they would see me if I chose to come down. They would do their own scans, consult all their doctors, and then come up with a treatment plan that I could take home with me to have my doctors here follow, but they didn’t think their treatment plan would differ from the one I’m currently receiving.

My phone call with MD Anderson, coupled with consulting a few sorority sisters, I came to the conclusion that a lot of the women in the IBC groups on Facebook have had the misfortune of just having really crummy doctors. They had to teach their doctors about IBC with the assistance of MD Anderson, because their doctors had never seen IBC. I’m so fortunate that my doctors have seen IBC and are either so fascinated by such a rare cancer (or me) that they stay up to date on everything involved with it. Our journeys are different and that’s okay. What matters is I feel like I’m getting the best care and am comfortable with my whole treatment team.

Scans & Great News

Friday the 20th, I went in for my first scans since being diagnosed. They did a mammogram (which sucked) and another breast MRI (which also sucked). If you’re new here: for a breast MRI, you lay on your stomach and let your boobs hang in two holes. Then the machine takes its pictures over a 30 minute or so period. It’s loud. It’s uncomfortable. It’s difficult to hold still that long. I just kept telling myself, “Well, last one of these EVER.”

After the pictures were done, I went to see Doctor Santamaria. I was NOT expecting what he was going to tell me. I knew the tumor had shrunk and was happy with that, but didn’t expect him to say it was gone! He pulled up the images and said, “Listen, I’m not a radiologist and we need the final read still, but I don’t see any cancer. You might just be in that 20% range of patients who have a total pathologic response from chemo.” Everyone talks about going out of their body and not comprehending things after getting told they have cancer, but that didn’t happen for me. It happened when I was told there is no evidence of disease. I left his office cautiously optimistic, refreshing OneChart every 5 minutes looking for the final radiologist read.

While waiting for the final read, I had to go about my day and went to the Shadow Lake Hy-Vee to get my 3rd Covid vaccine. A 3rd dose is recommended for immunocompromised patients. Seeing as, I’m having major surgery and radiation soon, I’m about to be in that category again. I knew from the last chemo dose that my immune response was a little intense, so I decided the only day I could do it was Friday, since I had no plans Saturday and could recover. While waiting to be called back for my vaccine shot, I kept refreshing OneChart and I finally saw the report. I took a deep breath, opened it, and BAM!: “Known right breast carcinoma no longer visualized, consistent with chemotherapy response. Known right axillary nodal metastasis no longer visualized, consistent with chemotherapy response.”

When I say I almost cried in the middle of Hy-Vee, I almost cried in the middle of Hy-Vee. I did make it to my car and was on the phone with my good friend Erin when I finally did cry. 16 rounds over 4 months worked. All that shit. All the disruption to my well laid out life plans. It worked. It was worth it. I’m the exception to the statistics, just like I told myself I would be.

Gala

After an exciting afternoon, we went to the Annual Fundraiser Gala by the local breast cancer nonprofit, Project Pink’d. We took my sister Anne and her husband Chris; I wanted to show them a fun and fancy time as an appreciation for being there for me through all this. We met at the Embassy La Vista Conference Center and immediately ran into friends Jasper, his wife Andrea (a fellow breast cancer patient), and Dr. Figy. The five of us had a great time discussing medical things while Chris and Mitch stared at us and each other, hoping the whole night wouldn’t be like that. (Don’t worry it wasn’t)

We ate delicious “heavy hors d’oeuvres” and explored the silent auction with tons of items we couldn’t afford. During the live auction we tried to guess how much each item would go for. One point was awarded for being the closest without going over and another point was awarded if you guessed spot on. I’d proud to say I won the game!

Following the live auction was the survivor presentation. They gave all us survivors a mini flashlight and we stood up and lit it. Then we all went to the stage and danced to a power song. It doesn’t sound like much, but it (coupled with the news of the day) had me bawling. Being on stage with at least 100 other survivors and thrivers reminded me I could beat this. I’m not alone. I’m not the first or the last. It was so empowering to be around so many women who just “got it.” It was the first time I’ve ever felt 100 percent okay with being bald in public. It was the first time I’ve felt 100 percent seen and understood in public. It was safe. My sister said that the speakers and event really captured what it’s been like for me and she was in awe. It really was simply amazing and everyone should go to the event next year!

Moving Forward

Now we are on a new week. I’ve fully recovered from the COVID vaccine. I have a few more appointments this week, and a few fun things on the schedule. I’m ready to conquer this bit of survivor’s guilt I have going on (a post for another day—Google it in the mean time) and the last two parts of active treatment (surgery and radiation). Let’s goooooooooo warriors!