Reilly Starr was diagnosed with MBC in January of 2019. In addition to more than 20 years of public relations and communications for major corporations and law firms, she also founded her own businesses that focused on empowering women and children.

 

Full Transcript

Discovery of Metastatic Disease

 

Reilly Starr:

In the middle of 2018, I had my first child. And it was a very easy pregnancy for me. However, following my pregnancy, I really started to go downhill and feel a lot of pain throughout my body. It was uncomfortable to sleep. I was, at night, moving from the couch to my bed, back to the couch and using pillows to prop myself in ways to feel comfortable. And yet I really found no comfort. I would say as a college athlete, I’ve gone through many injuries, and many surgeries and the pain that I experienced was pretty unbearable. 

I tried to communicate this to my pediatrician who just sort of, you know, tried to comfort me by saying, this is what it’s like to be a mom for the first time. Which I tried to, you know, respect and understand and do my best to just try to dull the feelings and the pain that I was going through. But it was really, at the end, I knew in my gut, there was something not quite right. 

And so after really pleading with my pediatrician, I was able to get my first mammogram and when I had that mammogram, I was in a lot of pain. It was really hard for me to even turn over, to let the nurse get a better image, or just, you know, even try to communicate what I was going through. It was just so immensely painful. 

And sure enough, we found seven tumors in my breasts. And if anyone is watching this that’s gone through this process, you know that that’s a lot. And it was really an emergency situation that I was in to start the process of diagnosis. 

The scans started, we scanned my breasts and then we realized that there was more to that. So I was obviously beyond the early stage. And it went from my spine. We started to notice that there were tumors and it went up to my neck. And that’s when, you know, it was pretty clear I was Stage IV and I was 39 years old at the time.

Coping with a New Diagnosis

Reilly Starr:

Following almost a year of my first line of treatment, I was diligently getting scans done and x-rays and making sure that I was as much ahead of my cancer spread as possible. And, as you can imagine, when you’re stage IV de novo, you’re going through a lot of pain. It’s a lot of new pains. Occasionally it’s hard to decipher what is really an issue and what is a side effect and how to present just so many new, you know, feelings and experiences and moments that you don’t feel are normal, but should you report these, you know, problems? Are they problems? 

Really, how do you manage such a new – it’s not even a diagnosis at this point – it’s a new phenomenon. It’s like you’re experiencing something that you’ve never gone through before in your life. And being someone that had, you know, a history of athletics and endless injuries that were typically within, you know, just pointing to where the pain was, or saying enough keywords that a doctor could easily remedy the situation. 

But when it came to my newfound life of cancer, I quickly realized it’s extremely difficult to describe sometimes. Because sometimes the pain doesn’t happen every day. Sometimes a pain could happen just once and it was severe. And sometimes you just forget because the pains all start to mesh together. So when it comes to having a conversation with your doctor and really trying to create an accurate picture of what you’re experiencing, it’s extremely intimidating and it’s challenging and it’s trivial. 

And so, you know, making sure that you’re conveying an accurate picture of what is happening to you is something that should be simple. And it’s so far from being simple that you find that you’re in a guessing game and you need, you know, someone to lead you. And so it’s great to talk to people, but when you’re in the midst of it, and you’re in the trenches of trying to figure out something quickly, it’s a very intimidating and oftentimes depressing experience. 

When I was trying to decipher exactly what I was going through, it was very overwhelming and I, you know, could barely describe it to my family or my closest friends, because I couldn’t even understand what was going on. And quite frankly, it was so new to me. I didn’t know cancer. I didn’t have friends with cancer. I didn’t have, you know, many family members with cancer, or enough to just find guidance. So, you know, I tried my best and I think that I guessed enough in the right way that I was lucky to tackle new issues presented during my first year that I was able to find solutions to the problems.

And I think that you really have to stay on top of conversations with your team, at the hospital that you’ve committed to. If you need additional help, you need to make sure that you are reaching out and advocating for yourself. And that’s a huge step in the process – is learning how and when to advocate for yourself and to really capture that, you know, this is a problem and it needs a solution and being direct about that and having the type of support that can propel you in the right direction.

Diagnosis of Brain Metastasis 

Reilly Starr:

When I was initially diagnosed, most of my cancer was in my liver, and it spread to my spine. And so that was quite an undertaking in terms of treatment, and it wasn’t just chemo, it was radiation. So, of course, there was a lot of imaging to go through and to keep on top of. 

What I didn’t expect, and I don’t think my team expected either, was that when we looked at the scan of my spine, we saw that there was a lot of need for radiation and controlling the cancer and the pain that was happening. But as we went up my spine, we started to see that my neck had some indication that there was activity happening. And I don’t think anyone on my team, and I love my team, I have full faith in my team, I respect them. I really don’t think anyone expected for there to be as much activity happening in my brain as there was. 

In fact, I will never forget sitting in the waiting room with my mom, who is my number one fan, and she couldn’t even wrap her mind around how many lesions I had in my brain. And it was just – I remember it was a moment of reality, having to convey to my biggest fan, just how much treatment I would need, how much help I needed, to eradicate what was going on in my brain. 

And I think at that point in time, I had such a rough first year, like most of us do. Just trying to mentally process what we’re going through. Physically learn how to manage our, you know, aches, and our pains, and our questions, and, you know, how do we communicate all of this to friends and family, to the doctor? It’s a real intimidating and daunting experience in our first year and throughout the entire experience of what breast cancer brings to us.

But I would say, when you’re learning the ropes, at first, it can be something that comes with error and questions and doubt. And I think it’s important to not only convey everything you’re experiencing, because at the end of the day, you don’t know if one thing can actually be a very strong indicator.

So don’t hesitate to communicate and to share your aches and pains and fears. And you know, if you felt something a week ago, but you don’t feel it today, you need to talk about what happened a week ago. Because these are signs that will lead to potential problems and you need to try to identify these problems as soon as you can.

Making Treatment Decisions

Reilly Starr:

When I first learned that the cancer had spread to my brain, I was just knocked off my feet. I was overwhelmed. It was something I didn’t expect so quickly following my initial diagnosis. So it was a real moment of needing to educate myself and create as many options for myself. While I had so much vested and trust in my lead oncologist, I felt like this was the time that I needed to start to branch out and ask others. Because, after all, it’s my brain and my brain is the most important thing that I have.

And so I did talk to other oncologists and, you know, made sure that I was seeking out the best advice that I could possibly gain in this mission to make a determination as to next steps for myself. I can’t stress enough that it’s important not to be led into a decision without you being fully knowledgeable and able to feel confident in what’s being recommended to you. Because, you know, you need to understand what’s happening with your body and ask questions. And if you need to develop a team outside of your local team, make that happen for yourself because you’re fighting for your life and you’re fighting for all those that love you, so you need to really take the time to understand the problem and seek out as many solutions and then decide what the best solution is for you. 

In my case, you know, I could have tried other drugs, and I did, and it didn’t work, unfortunately. So I did, finally, reluctantly, give into whole brain radiation. But actually we first focused on a part of my brain, on the cerebellum, because that’s where the most activity was. And unfortunately, you know, my radiation oncologist didn’t think it was good enough. We needed to do more and we did. But it was, you know – it was a combination of me understanding the steps we were taking and my radiation oncologist enabling me to make those steps and in a comfortable way, and not rushing into something second guessing it, regretting it. 

It really needs to be a solid decision, not only for you, but for your team and your family. So, you know, you all feel confident that you did the right thing because it’s your brain. And you want to feel that you’re doing the best for yourself, and that, you know, it’s not a mistake that you regret down the road. Because we have precious time that we need to protect and we need to make sure that we’re doing the best for ourselves and loving ourselves by doing as much educating and talking with, you know, the experts as possible.

Making of the Mask

Reilly Starr:

When you commit to whole-brain radiation, there are steps that you have to take ahead of time to prepare for the actual procedure. And in hindsight, it got easier with each time that I had to radiate. But you should mentally prepare yourself for, not only the fitting of a mask, that will not only be placed on the front of your face, but will be also on the back of your head.

And I would say that initially the heat that you’re going to feel from the mask taking shape to your face is going to be a little startling, but it’s never to a point that you are going to feel in danger. You’re just going to probably feel a little alarmed by the amount of heat that you’re experiencing while in a mask.

But I would say that that part is not as bad as when they clip you in and that’s to make sure that you’re not moving because it’s your brain. And you do want to make sure that you can save as much as your brain as possible from being incorrectly radiated because you do want to make sure that you’re pinpointing all of the lesions accurately. So by having your face, not only in the mask, but also pinned in a way that you can’t move is going to be the best for you ultimately. But it may be uncomfortable. If you find that you are claustrophobic or you’re going to have trouble with it, you can tell your doctor ahead of time. They can medicate you. I did not choose that just because I wanted to make sure that I was fully aware of what was going on. 

It was a painless procedure. And the other thing to keep in mind is it took about a minute, which was great. It doesn’t take much time at all. It’s just the prep and being in a mask can be uncomfortable, mentally more than physically, because it’s over very quickly. And for me, I talk a lot if I’m nervous and I just made sure to talk to the nurses and, you know, they understand that this is nothing that, you know, you can scoff at. So they’re there for you and just talk to them. If you need to start over, start over. If you need to take a second, drink some water. Take care of yourself. They are there for you and you need to feel as comfortable as possible in this procedure.

Once you’re on the bed and you have your mask on, you can expect to be able to see above you what’s going to be doing the radiation. And the machine is going to whirl around, not only your entire face, but it’ll take probably four, sometimes five, different x-rays. So you need to be prepared for seeing an instrument kind of whirling around your face. And you’re not going to feel anything. It’s not heated, it’s not uncomfortable. It’s just taking pictures. And usually the staff will have stepped out at this point. So if you have any issues, you definitely will be able to click an alarm and they’ll come in immediately.

And I think, you know, what you always just need to keep in mind is that it’s going to be a quick procedure. And each time you have to go in – so usually it’s 10 times, occasionally if you have just a minimal amount of lesions, it could be half that amount of time. So ask ahead of time what to expect and that’ll help you prepare for the procedure. 

So once you’re done with the procedure and they’ve captured the different angles that they need, the staff understands that you’re, you know, in a stressful situation, it’s uncomfortable – they will come in immediately. If you think that you are particularly, you know, stressed out, express that to them. Say, you know, I would kind of joke around and say, you know, clap my hands like I was a coach and say, let’s go team. We’re going to go fast. And they kind of find that, you know, it kind of breaks the ice a bit, but it also keeps them on their toes. Like I’m a person that is uncomfortable right now. I need this team to come right back into the room and take the mask off. Because they’re there for you and they understand, and they will try to make you feel as comfortable as possible.

Experience Post Radiation

Reilly Starr:

Personally, my whole brain radiation experience was over the course of 10 treatments. And those 10 treatments happened over a weekend. So I had a break which I felt I just wanted to speed through it all. But the weekend does happen. The staff does have, you know, some time to enjoy on their own. So as much as you may want to go through all 10 days, you’re gonna have to take a slight break. 

But following those 10 days, you’re probably gonna feel a little nervous about what to expect, when do the side effects start to, you know, come into play. And I personally felt the effects about a week later. I just had severe fatigue and so I slept a lot. And what’s interesting is that the sleep that we have known our entire lives, tends to help us and revive us and refresh us. But when you’re recovering from whole-brain radiation, you actually just continue to feel tired. And, you know, it’s perfectly normal to have that fatigue for about a month or so following the procedure. And that’s normal. Everyone’s different. That was my experience. And I think that a lot of people feel the effects for about a month afterwards. And then he started to normalize a bit. 

However, you may experience a cognitive decline. And, you know, identifying that decline is kind of by happenstance. So it’s not like immediately you can’t remember, you know, your old neighborhood and the dogs or your teachers from, you know, your history of school. It’s more like short-term memory and you can’t remember if your husband just reminded you to take out the trash. That will completely slip your mind occasionally, and you just need to, in my opinion, train those that are close to you about your tendency to forget more and your short-term memory has been impacted. And that if you forget something, just kindly remind me. I don’t mean to frustrate you, but I am recovering from whole-brain radiation. 

And you don’t even need to go into that. Just say, I just need a little reminder every now and then. And it’s better to do that ahead of time than frustrating yourself, frustrating those around you. And again, it’s just a matter of educating people, you know? It’s unfortunate that you and I have had to go through whole brain radiation, but we come out on the other side with a brain that is able to function better and hopefully for a long time. And it just is a matter of recovery. 

And hopefully you do fully recover. And there’s – you’ll be taking medication to help with that recovery. And the interesting thing is that what they may prescribe to you, it should be very effective. So it’s just always taking each day by day and making sure that, you know, you have the support that you need.

Whole Brain Radiation Results

Reilly Starr:

Following my whole brain radiation procedure, I was able to figure out and anticipate any type of forgetfulness I was having. Or just helping to train my family and friends on, you know, needing little reminders here and there. But what was most important was the followup with my radiation oncologist and figuring out my response to the procedure. And thankfully, I responded very well. 

The 60-plus lesions were showing shrinkage, not all of them. But there was confidence that I was on the road to the right recovery. And so I was elated. It was such a daunting step in my cancer treatment. And yet it became one of the easier things to recover from.

So, you know, you just have to be patient with yourself and everyone else needs to be patient with you. Because our brain is the most important thing and even though following the treatment, you’re trying to make sure that you’re taking care of yourself in the best way possible, give yourself a chance to just relax. Because there are long term effects that you can experience. So just be easy on yourself and, you know, just be in touch with your memory, your response time, your needs. Creating a system for those around you to keep on top of your daily needs. And if you’re forgetful about something, it’s great to have someone there to help you and make sure that they understand what you need.