Day 248: Nothing Will Ever Be The Same Again

Eva (00:00): Hey, it's Eva.

Kristen (00:02): Hey, it's Kristen.

Eva (00:04): Before this episode starts, we're here with a little update. As you get closer to the end of this episode, it's going to sound like we're almost to the end of the whole story.

Kristen (00:13): But we're not. We've heard from so many of you that this story is helping. When you get to the end of today's episodes, stick around and we'll tell you what's coming up.

Eva (00:22): We especially want you to know that since these episodes were recorded a little bit behind where we are today. To find out how Kristen's doing in real time, follow along on Instagram at Breast Cancer Stories Podcast, you can even DM her there. So check the show notes for links. And now on to the story.

Kristen (00:43): This is a story about what happens when you have breast cancer, told in real time.

Eva (00:51): How many days do you have left?

Kristen (00:53): Five days. And actually yesterday was the last one of the whole chest and under arm area. Today is what they call boost. It's really concentrating on the scar, the mastectomy scar that's about three or four inches across my breast. And what they're doing is, it's maybe an inch on each side of that. They're concentrating on radiating that area. I've noticed that where the drains were and then any type of incision, they're really wanting to be sure and hit that extra to be sure that there's no residual micro cells that skipped out in those areas.

Eva (01:38): Did they explain why they concentrate on the scar and the incisions in those places? Is there some reason for that?

Kristen (01:46): What they said is they want to boost the radiation in that area to catch any microcells. A friend of mine explained it in the way of endometriosis. So a friend of hers had an incision in her abdomen where endometriosis, she had endometriosis removed and actually had because of microcells from the endometriosis that got into the area where the incision was when they were taking it out, actually grew endometriosis on that scar, which is weird, but it kind of makes sense. What they're trying to do is to be sure that in any areas where there was incision, or I imagine error, that they're going to be sure any microcells that might have been caught there during the surgery are nuked.

Eva (02:38): This is certainly true with breast augmentation, with regular breast implants.

Kristen (02:42): Okay.

Eva (02:43): That they try to get the implants in and out without anything touching them because that's how contamination occurs.

Kristen (02:52): Okay. So that makes total sense because there's... One of the drain holes is in the field that they carved out at the beginning. And another drain hole is about an inch below where the bra line would be. And so I have an area that's dark all around the drain scar. About a week or two ago, I had a mapping for the scar. So today when I go, it's a much shorter process rather than a 30 to 45 minute process where they're radiating, I don't know, eight to 10 spots. I believe it's just one area so it'll be quick. Today, when I go in, the physicist will be there to be sure that everything is going to be going according to plan.

Eva (03:38): Can you describe what it looks like right now, since most of the people who would be listening to us today cannot see you. What does your right breast look like? Especially the area between them, which is what I can see with my own eyes right now.

Kristen (03:56): Yeah. If you can imagine your entire breast quadrant down from your diaphragm, all the way up to the back of your arm and over your entire chest, that's really what's been radiated. What is the real problematic area is what would be between the two breasts. And the reason for that is that they've been hitting this area so hard, to get the lymph nodes in that area and avoid exposure to the heart. What it looks like is road rash, it's very raspberry colored.

Eva (04:31): It's the flat spot in the center.

Kristen (04:33): Yeah. The black spots are blisters. So there's black spots all the way down on top of the very raw skin and those are blisters. They feel very leathery, very hard. And what you can't see is it goes down below the breast also, I'm super lucky that I have expanders in and don't have my regular breasts that would have some flap overlap because the moisture down there would be causing more issues. So underneath, as you can see, it's the same.

Eva (05:05): Yeah.

Kristen (05:06): But you can also see because of the expander it's lifted. So in this case, the expander is a gift because it holds the skin straight out to where a friend of mine who had a lumpectomy down around in that area, had a real problem. She had to tape her breast up and air it out and just lay it there like this with her arm up. And she had a lot of moisture issues.

Eva (05:31): I have used a hair dryer on the underside of my boob. I have done that.

Kristen (05:35): Well, there you go. So what I'll tell you is that it builds, so this is going to get worse.

Eva (05:43): Oh, it is.

Kristen (05:45): Even though they're not going to be radiating anymore, the worst day that I had in a long time was Wednesday and I actually had Monday and Tuesday off. So I had a four day break. I had radiation Friday and then had the weekend off, had Monday and Tuesday and Wednesday was the worst it had been. So it had time to unfortunately bake. What gives me a little bit of satisfaction is that this is what it's doing to the microcells too. If this is what's happening to my skin, then I'm very grateful that that's what's happening to any micro cancer cells that might be lurking in my chest and my lymph nodes.

Eva (06:28): What are you doing with yourself? You had a four day weekend, did you work? Did you just stay home and rest? Are you able to do stuff with all of this going on?

Kristen (06:38): I am, but I choose to. So I had Ashley in town, which was lovely. She got here Friday night. So we had leisurely lunches and went to the beach. I had to really be sure that I kept this area covered and can't put sunscreen on it because of the chemicals in it. I just kept it covered. We did walk around the zoo on Monday afternoon. We did leisurely fun things. Now had she not been there, I would've done a lot more resting, but we did sleep in. I did work on Monday and Tuesday. When I get home, I took baths and what I'm doing is I'm doing a gauze soak. So it's gauze that is soaked in salt and baking soda, warm water mix. What it does is it soaks up all the moisture from the blisters. And then I do that two or three times a day for 30 minutes, lying in the bathtub, covering myself with this.

Kristen (07:37): And it feels really good. But then after it dries, it feels very tight and I have a tub of this stuff called silvadene that I put on it. It helps the burn, but it feels very tight. And I talked to the doctor a couple of weeks ago because I was having chest pains, almost like anxiety. And I was like, "What is this?" I said, "Is this anxiety?" "Is there something wrong?" And he said, it's actually the skin tightening making your chest feel that way. And I was like, "Oh, that's not cool. You should tell me that before."

Kristen (08:12): So to be honest, this is the first time through this whole process that I would've actually stayed home from work, except for the surgery, obviously. Right after surgery for a few weeks because of the pain. Now, the family that I work with, it's a real busy time for both of them and they really need me. So I pushed through it, but I have been taking pain meds, the same pain meds I took after surgery, that's what we're talking about as far as the pain goes.

Eva (08:44): Oh, that's pretty serious then.

Kristen (08:45): It's pretty serious. So this is seven weeks. It's still only 30 radiation doses and five are the boosts they're going to start doing today. I think the majority of people don't have this reaction. So I don't want to scare anybody out there. There's people who have three weeks or two weeks and a boost. And sometimes it's just in one little area. So I had double mastectomy with reconstruction. And so I have the expanders in. What they're doing right now is they're radiating, blasting, however you want to say it, my chest wall, as well as the lymph nodes that are in that area, since I did have lymph node involvement in one of my nodes. So the ones they didn't remove in that area and that side of my chest they're radiating. And because of the locations and the depth of some of my lymph nodes in order to avoid my heart, they had to really blast this area that's right between my breasts and coming and at an angle.

Kristen (09:49): I was warned at the beginning by my radiation oncologist, that she expected there to be blistering and we would manage with pain meds and all that kind of thing. The first time I went for mapping was July 30th. And then we didn't really start radiation until I think it was the 10th of August. I was supposed to be finishing on Wednesday and because of the break I had this week, I was just extending it two more days. I do drive myself there, but on the weekends I would take a half of a pain med and I have a pretty high pain threshold. I just have to imagine that when they're doing this, that it's blasting everything out. I just have to be very visual about it and so I'm surprised.

Eva (10:36): One thing I'm curious about is the other people's reactions to what you're going through. And there's probably people who you see all the time who've gone through it or seen you frequently enough to adjust to all these changes, but you just had Ashley there for the weekend. It almost doesn't matter who Ashley is, but you've known Ashley for 10 years?

Kristen (11:00): Eight years now.

Eva (11:01): Eight years.

Kristen (11:02): Mm-hmm (affirmative)

Eva (11:02): And she hasn't seen you this whole time. So can you talk a little bit about her reaction to you and what that was like seeing you for the first time after not seeing any of this before?

Kristen (11:15): Yeah. She loves me unconditionally and it's hard to ruffle her feathers on the outside. She went through this a little bit with her grandmother twice. Although, I don't think she saw the burns. There was never a reaction like, oh my gosh. I've been sending her pictures along the way. And so she's seen my hair coming back. She saw me with no hair. I could tell that she totally understood. I think for me, the most frustrating piece was trying to find clothing to wear that would not bother this and that actually looked nice that I could go in public with because I live in these tank tops, partly because I want this area under here to be aired out, under my arm. She was asking me, what did it look like in the radiation room and what happened? And she was more curious about the process.

Kristen (12:05): I think that she could see I was strong and she understood if I needed to take it easy. So I would say that she didn't react poorly at all. I think it was that anything, she saw more strength. I will say that when people see this, they're shocked. The people that I've been working with, I'll show them what's going on and you can see people's eyes open and be like, "Oh my gosh, I had no idea this was what radiation was." Somebody who I've never hear cuss before had a "holy shit".

Kristen (12:42): And people want to know if I'm okay and yeah, I'm okay. I mean, what am I going to do? This is another temporary situation and this is a huge part of keeping recurrence at bay, hopefully. I don't know if we talked about this before, but the oncologist, when I asked her about, before I started any of this and made a final decision on whether or not to do radiation, because I really didn't want to do it. I really didn't. It wasn't for any reason, except it was just my body being in a boxing ring all year and I just mentally wasn't ready for more.

Kristen (13:15): When the oncologist told me that there was a 30% chance of recurrence without radiation, just in general. And that with radiation, it was an eight to 10% chance of recurrence. I mean, I gotta do it. It's like the hormone blockers that are coming, it reduces the chance of recurrence by 40%. I don't know what my chance of recurrence is. I've never asked, "Hey, what are the chances based on this, this, this and this." But I don't want to know that. That's not going to be helpful anyway, but I know that I'm diminishing the chances by more than 50% by the things that I'm doing, if there's any microcells that's going to get it.

Eva (13:55): So are you going to be able to go get this expander grained at all? Can they, now that the radiation is over, make it smaller?

Kristen (14:03): I don't know. I see him on November the 11th. And so what I've asked is that they even them out and that doesn't necessarily mean make the other one this much bigger.

Eva (14:14): That's almost two months away.

Kristen (14:17): I know. And it has to do with the skin healing. I've gotten used to the size of this big whole thing over here. This thing that's, I think it's like 400CCs more than the other one.

Eva (14:28): A badly wrapped package at one point.

Kristen (14:34): It is bad. It really is. So they're doing the exchange probably in March, April. He said he usually does it six months after radiation because of the skin. And then there'll be a second surgery in June or July, who knows? Maybe they'll fill the other one this big and I'll just walk around like this for-

Eva (14:57): Badly wrapped packages just in time for Christmas.

Kristen (15:00): At least they match. Right? So I got responses I didn't expect yesterday when I sent out those pictures that I sent to you of what the radiation room looked like and the machine. One of my friends said, "You need to warn me if you're going to send something like that. That was disturbing." And it wasn't in a bad way, it was a shock. And this is one of my friends who had taken me to radiation and had seen me through a lot of things and was just very surprised at what I walked into every day and what the process was.

Eva (15:41): Did that surprise you?

Kristen (15:43): Mm-hmm (affirmative). It did.

Eva (15:46): Do you think it's your job to warn people?

Kristen (15:50): No. I don't think that I realize how shocking all of this is to people, because I feel like I'm really open about it. They ask questions, I answer them and I had tried to show what the room looked like to people.

Eva (16:08): I'm looking at them. It's extremely cool.

Kristen (16:12): I think it's cool too, that's just me, but I've been going through this all year.

Eva (16:18): Yeah, we'll put them in the show notes.

Kristen (16:21): I don't know if you can tell, because I'm so wrapped up, but the room is really cold. And so they always say, "How many blankets would you like?" And I'm like, "Two, I'm the high maintenance girl." Because my arms are lifted above my head and they have blankets wrapped around my arms and I couldn't lean over and smile or anything because they already had me positioned and my head was turned slightly and they had done all the measurements on me. And so I couldn't really move.

Eva (16:48): There was a view that made me think it would be really uncomfortable to stay like that for 45 minutes.

Kristen (16:54): Mm-hmm (affirmative).

Eva (16:55): It's not like laying down. It's like laying down in a position you can't fall asleep in.

Kristen (17:00): Oh no, your arms are above your head. I don't think you can see it, but you're holding on to bars like handles.

Eva (17:07): Oh shit handles.

Kristen (17:09): What's that?

Eva (17:10): Oh shit handles, the car.

Kristen (17:13): Oh yeah, exactly. I guess it would be the bed or the-

Eva (17:18): Platform.

Kristen (17:20): ... platform. So it goes up and down and goes side to side. And when I lay down, the very first time I was there in July, they measured exactly that platform. There are all kinds of little things around it like where my butt sits, where my feet, where my arms go, all of that is all calculated and what's the word I'm looking for?

Eva (17:42): Calibrated.

Kristen (17:43): Yeah. Calibrated for me. And so when I go in, I know if I need to scoot down or whatever. And I have tattoos, a little T dot, a bunch of them, but there's one on each side of my boobs, my sides and they line those up. In those pictures, you can see those green things, the green lines, they line those up and the girls twist me and move me until the beam is lined up with those tattoos.

Kristen (18:10): And they draw on me to be sure once they get those lines right, they draw on me to be sure that when they go in, the beams are still lined up there and there's a whole lot that goes into it. I asked them to take pictures yesterday, because it was called a bolus day. And the thing that I'm wrapped in on my chest, that's what they do every other day. And that helps to do something to get the radiation amplified I think. Otherwise, I'm just lying there with everything open. So they do that for about, I'd say a third of the treatment every other day. Otherwise, it's just me and my breasts laying out there. So yeah, I asked him to do it yesterday and I said, "Is this a weird request?" And she's like, "No, most people ask us to do this." But I think what was really intimidating to people was how big the machine was.

Eva (19:02): Looks a little bit like a spaceship I think.

Kristen (19:06): And what you don't see is sometimes there's these flat screens that open up, it's like a U-shape and it's squished back and they're not screens, but they're a rectangular mechanism that come out and they deliver something. I don't know if they just take x-rays or what, then that whole thing moves all around you. There's also an apparatus that you don't see there, that clicks on, that almost makes it look like a microscope to get the lasers closer to me to deliver the electrons in that area. It's pretty interesting. What other questions do you have when you look at those pictures? I'm just curious. What was your thought?

Eva (19:48): I'm disturbed that someone told you they needed a warning for this because of all the things I've seen so far, this is probably the least scary, but that's all in the eye of the beholder.

Kristen (20:01): I think that people imagining me there, they don't imagine that, they just imagine being at the dentist and getting x-rays or something.

Eva (20:12): You do look pretty vulnerable. From that standpoint, I can see how it would be maybe upsetting. So five more days and then you told me November 11 is when you see Patella, what is between now and then?

Kristen (20:28): October 1st, I start taking that hormone blockers and my skin heals, yay! But the hormone blockers, I'm a little nervous about, I think it's called Anastrozole. And it's post-menopausal version of Tamoxifen. And I've already had a bone density test as a baseline because it's supposed to cause degeneration and pain in your bones and especially hips and back. I've seen people who have really no side effects and there are people who have so many side effects that they have to try something different.

Kristen (21:04): It's a hormone blocker and, and it blocks estrogen because the type of breast cancer that I have is estrogen positive, very estrogen positive, 79% out of a hundred. And so what this is supposed to do is to block any estrogen that I may be ingesting that may be coming out of my body from my ovaries, somewhere. And estrogen is also stored in your fat. The reason that they're trying to block it is because my type of breast cancer feeds on estrogen like I would feed on ice cream.

Eva (21:38): Good analogy.

Kristen (21:39): And sugar is one of the things that also breast cancer feeds on. So I'm trying to keep that at a minimum as well and dairy. And so with my type of breast cancer, the suggestion is fish or plant-based diets, especially no dairy and anything that might contain any kind of hormone, even when it's clean. So I try to do that but it's hard.

Eva (22:04): Yeah. It is.

Kristen (22:06): It's difficult.

Eva (22:08): So we're winding down, it's very strange to be at the end, it feels like a milestone. And the only thing that I'm wondering now is probably not a question. I don't even know if I want to ask you this question, but I'm going to, when do we know that everything worked and that there's no cancer left?

Kristen (22:32): Well, there's no cancer right now. They call it NED no evidence of disease instead of being cancer free, they haven't been able to find any. You never know, we're never at the end either. I was having this conversation with someone and I think that's the hardest piece. Is that a lot of people are like, "Oh, you're finished, you're finished, yay!" And I am finished with the tangible stuff that you can see, but I've been told by my oncologist that I need to let her know if I have a cough that's unexplained or pains in my body in certain places that are not resolving. And that's in case it's metastasized someplace else. And so there are no scans that they're going to do on a regular basis. They'll do some blood work and I check in with my oncologist and my surgeon periodically and probably the oncology radiation, radiation oncologist.

Eva (23:38): So there's no diagnostic that says, all clear.

Kristen (23:43): No. The diagnostic that was all clear was the pathology after the mastectomy that they got it all. And when they took 11 lymph nodes and only found one cancerous, that did tell them that still there's something there. And microcells could have gone through the lymph system. And so that's why they're hitting this area so hard, but you just keep looking over your shoulder. I mean, and I'm going to try not to do that because everybody's like, "Oh, you're under remission," but I'll take these hormone blockers for five to 10 years.

Kristen (24:21): I know that the longer period of time that goes by without recurrence, the less likelihood of recurrence there is. But there's almost a fear that I have that as soon as I stop any kind of treatment to keep it away, that it will come back. And it's interesting because as I'm talking, I have a pillow and my hand is doing this to the pillow. It's like, I'm so nervous about it. I'm grabbing the pillow and angst because just the thought of all that is somehow I live my life.

Eva (24:51): And I instantly start wondering what can I make a joke about? What are you going to be for Halloween? Can we work around this badly wrapped package somehow?

Kristen (25:03): I'll be some kind of mummy, with a fake breast hanging out or something, I don't know.

Eva (25:12): Burn victim.

Kristen (25:13): Yeah, there we go. It's not that anybody needs to realize how hard it is, but I think a lot of people want me to say, when they say, "How are you?" They want me to say, I'm great. I'm so grateful. I'm better. I'm well, I'm the same Kristen as I was last year at this time and I'm not. Everything's changed, but at the core, I'm still the same person. And I still have a happy outlook on how my life's going to be, but I sure will live it differently.

Eva (25:45): What do you wish people would ask you instead of expecting you to say, "I'm in remission, I'm great and I have a big celebration." Not that we shouldn't, but...

Kristen (25:56): No, totally. I'm ready to have a celebration this weekend, next weekend for being finished with all this stuff. I'm still here if you need anything and I know it's hard is the way that I would want people to react. I guess I just want people to understand that I still need them and that I'm not Kristen who's a hundred percent again and that do everything you can to not get this shit. I think that's what I want people to get. Is that this is no joke. I think people would just expect me to be the same person and I'm not.

Eva (26:33): You never will be again.

Kristen (26:36): Mm-mm (negative). For better and worse. Right?

Eva (26:41): Mm-hmm (affirmative).

Kristen (26:41): Completely.

Eva (26:43): I'm a little bit afraid of you now actually.

Kristen (26:47): You are, how come? Because I glow?

Eva (26:52): There's pretty much no ass you have not kicked at this point.

Kristen (26:57): That's so true.

Eva (27:02): Today's episode was recorded at the end of Kristen's radiation series on day 248. But unfortunately or fortunately, depending on whether you look at it like Kristen does, I guess, the story does not end here.

Kristen (27:16): For our next episode, we talked on day 301 just before I went back to see Dr. Pacella, my plastic surgeon, who I hadn't seen since before radiation.

Eva (27:25): And then we were lucky enough to have a conversation with Dr. Pacella himself, which was really interesting.

Kristen (27:31): That was so much fun. Of course, we had to talk on day 365 after seeing the oncologist in person Dr. Ali, who I hadn't seen since before surgery.

Eva (27:41): And we're planning some special episodes for those of you going through treatment, including the lists of things you need for chemo, radiation and surgery.

Kristen (27:50): Our plan for the future of this podcast is to tell another person's story from beginning to end. So if you're facing a cancer diagnosis, have not yet started treatment and have a heart for helping others, we really want to hear from you.

Eva (28:03): Follow us on Instagram at Breast Cancer Stories Podcast, check the links in the show notes for all the resources mentioned on this episode. If you're facing a breast cancer diagnosis and you want to tell your story on the podcast, we'd love to hear from you. Just send an email to hello@axis.io. Thanks for listening to Breast Cancer Stories.