Day 176: This Is Not The Outcome We Wanted

Eva Sheie (00:08): This is a story about what happens when you have breast cancer, told in real time. Well, I got a text from your sister, so it sounded there was a little bit of maybe a communication bump in the first day or two after you were-

Kristen (00:29): Yeah. Yeah. There was a little bit of a communication glitch and that's really not important, like the details of it. I think that it's really important that you have someone who is able to disseminate the information accurately, maybe concisely to people. I kind of had a tree. I have some different groups of people that communicate with one another and, like a family tree, a point person who would disseminate that information because there were a lot of people whose feelings were hurt. These are people who, they just love you and they want to be sure you're okay.

Eva Sheie (01:05): Well, I think the longer you don't get an update too, the more you think something's wrong.

Kristen (01:10): Well, yeah, because it was a five hour surgery. If something goes wrong, is it seven, is it eight. By this time it was the evening. I had gone in at 7:00 AM, but everybody got what they needed eventually. But it really is important that there is someone who can relay that information. Going in that morning, it was like no experience I've ever seen. I went into the Scripps Ambulatory OR, and I was like, "Ambulatory? What is it? Is it people walking? What's that?"

Eva Sheie (01:40): You can walk around once you're done is... I think that's pretty much what that means.

Kristen (01:46): Well, what I interpret it as being now is that you are ambulatory enough to walk into your own surgery.

Eva Sheie (01:54): Oh.

Kristen (01:55): That you don't need to be wheeled in.

Eva Sheie (01:56): It's not trauma surgery.

Kristen (01:58): Right. So, I got there and because of COVID, I went in by myself and I will say that since all of this started, the only thing I wanted was for someone to be there with me when I went in and when I came out. I was like, I can take chemo by myself. I can do all these things by myself. I just need somebody to be with me when I go and when I come out. I didn't freak out. I just was like, okay, this is how this is going to go. I'm supposed to have some time alone. The nurse took me into the room and I sat in a recliner. And so, then each of the doctors came in and then I stood up and Dr. Pacella drew lines and right behind him was Dr. Rivera watching and measuring and telling him, "Mm, I need a little bit more over here." So, it was really cool to see the surgeons who were going to be taking care of me collaborating.

Kristen (02:56): They said, "Okay, we'll see you in about a half hour." I didn't know how I was going to get to the OR. She's like, "Okay, you ready?" And we walked over there. Everybody I had just spoken to was there and climbed up on the bed as if I was climbing onto something to get an x-ray and put my head down and then anesthesia and I went under. I was thinking about, why did they do that? I'm sure that there's logistical reason, but from a psychological reason, being able to have control of walking into the biggest surgery of my life and take my place and be a participant was really empowering and I didn't know it. Just something that small. I wasn't at the mercy of the surgeons, even though I was, but I was an active participant going in and part of the team of making it happen. I woke up in recovery and there was much, much, much more pain.

Eva Sheie (03:53): Did you say how long it was?

Kristen (03:55): A little over five hours. Each doctor I think was in there about two and a half hours. I think I was in recovery for two hours. I remember the very end of it just being in an enormous amount of pain. If I'm remembering correctly, my oxygen level was low. My pulse was low. My blood pressure was low. And so, they didn't want to give me any more of the other pain medications because it would lower those things even more. They were taking me to my room and they did the surgery on the bottom floor of Scripps Clinic. I'd made this walk, I don't know how many times from the hospital to the clinic, you go through like a little corridor. So it wasn't like just going upstairs. I know he didn't hit every bump that there was, but it was probably a good 10 minute trek.

Kristen (04:50): I have a pretty high pain threshold I think. Just tears are just streaming out of my eyes. I was just like, "Ow ow ow." They took me up to my room and the first person I saw was my sister and I was crying just because in pain. I saw my sister crying and it scared me because I thought, what does she see that I don't know? It wasn't anything. It was her realizing that her sister had just had surgery and was in a lot of pain and I'm sure she was scared for me.

Eva Sheie (05:27): Was anybody there kind of explaining to you as you're going along through this part of the process what's happening?

Kristen (05:35): Yeah, they were telling me, but, you know, I was drugged up and everything hurt, any movement. I don't remember if they moved me to my bed or I was in so much pain I just think I kind of blocked it out, but it was a lot of pain, a lot more than I expected. You don't realize how much you use those muscles. At that point in time, the first thing I asked is how many drains do I have? Because two drains meant that there was not lymph node involvement. And three drains meant that there was. I had three and everybody wanted me to get up and walk. I was like, "Oh, I can't even turn my head." To anybody listening to this, there's going to be pain. Right? I think that I expected to come out and be under so many good drugs that I wouldn't feel anything. I would just be like, "Okay, keep me high."

Eva Sheie (06:30): Well, who wouldn't think that? I mean that's what everyone thinks.

Kristen (06:32): Yeah. I think they had given me as much medication as they could at that point. That happened when I had Brian, I had two epidurals and they gave me as much as they could by law. I was telling them when I should push because I could still feel him. And, so that's a trend. I didn't even think about that.

Eva Sheie (06:48): Well now we know why, that's just how Brian is.

Kristen (06:54): Pain in the ass.

Eva Sheie (06:58): You can still feel him.

Kristen (06:58): Love you Brian.

Eva Sheie (07:00): You can still feel him.

Kristen (07:01): But they were working on getting my pain down. I don't think Dr. Rivera came that day. I think he came the next morning. So, Dr. Rivera's been with me since the beginning, he's the cancer surgeon and he did the biopsy and he was the one to call me. Before we went in, he explained to me very adeptly one of the things he was going to be doing is doing a sentinel node mapping. What that meant was that he was going to be looking at where the lymph node was closest to the tumor. And the procedure that I had the day before, where they injected some stuff into my breast, helped him to locate where the nodes were going to be, that would be...they were auxiliary nodes that were going to be good ones. I knew when he did the mapping that he was going to do a biopsy.

Kristen (07:56): And so, if there was cancer in the node, he was going to take all of the nodes. If there wasn't, then he wasn't. There was also a chance that because of the chemo and because of the location of my tumor, that they might not be able to get a complete mapping done. If that was the case, then he was going to go ahead and take all of those as well. I wasn't sure which it was. I just knew that my arm hurt a lot more. When he came in, my sister was there and my friend Jerry was there.

Kristen (08:34): He kind of went through the procedure of what happened. He said, "And we removed lymph nodes that were cancerous." He said, "This is not the outcome we wanted." He looked very concerned. He said, "Do you understand what I told you?" And I repeated it to him. He said, "Okay." He said, "I will let you know the minute I get the pathology report back." He left and I just broke down crying. My sister and Jerry said, "What does that mean?" I said, "Well, that means that the cancer wasn't just in my breast, that it went into the lymph nodes." That news, to me, you may as well have told me that I had cancer in my pancreas at that moment.

Kristen (09:22): It was more of a shock to me to hear that than it was to hear that I had cancer. It's because to me it was a progression of cancer. In my mind, I've been compartmentalizing this and chunking this the whole way. I needed to get through the surgery and the cancer would be gone. Okay, next. That's how I was looking at it. Now all of a sudden we have some disease in the lymph nodes that goes through your entire body. What does that mean? What does that look like? At that point we didn't know how many lymph nodes had been cancerous and I didn't know how many he had taken and we didn't know anything about the pathology report.

Eva Sheie (10:02): So, he was there telling you all of this, but he didn't give you all the information?

Kristen (10:07): We didn't have it all.

Eva Sheie (10:08): He didn't have it all. Was he waiting for something? Some results from somewhere else to come back?

Kristen (10:14): Yes. What they basically, they took the tissue in both breasts, all of the tissue. I don't know how it's sectioned out or anything, but it's sectioned out into different cartridges and different, I call it slices, that are looked at by the pathologists. It's literally looked at from absolutely every angle. What he knew is that he had found cancer in a lymph node and that he had sent all of this tissue to the pathology department.

Eva Sheie (10:44): Do you know if he's finding it in a lymph node, is he able to see it with the naked eye in that situation?

Kristen (10:50): I don't believe so.

Eva Sheie (10:51): No. Okay.

Kristen (10:53): Because they stopped while they were doing the surgery and were able to do a biopsy right there. He wasn't trying to alarm me, but he was trying to let me know "Here's what we did." And I think he was also trying to be really honest about... This is not the outcome we wanted. I think I gave so much weight to that statement. It really freaked me out. Because I didn't know if it was one lymph node, two lymph nodes, three, four, five, that he had seen, that he had biopsied.

Eva Sheie (11:26): But he didn't tell you that at that moment, I think what would make me feel less uncomfortable right now is do we know the answer yet? Or are we still waiting for that answer?

Kristen (11:40): It was about a week later when I went to see him. It was the best case scenario for finding cancer in a lymph node. He sent 11 lymph nodes to be tested. The only one that was cancerous is the one he tested, which is great news. Imagine that though, like what are the odds?

Eva Sheie (12:03): What are the odds? 1 in 11.

Kristen (12:04): Which is great news, right?

Eva Sheie (12:07): Yeah.

Kristen (12:08): I think the news that was the hardest to process was that what they also found is that the chemo wasn't effective.

Eva Sheie (12:18): None of it?

Kristen (12:19): There was one sample that showed some chemo scarring on the tumor itself, but the lymph nodes and the other pieces of the tumor, like the majority of the tumor was nonresponsive to the chemo.

Eva Sheie (12:37): How normal is it for cancer to not be responsive to chemo at all like that?

Kristen (12:42): I'm going to have that conversation with my oncologist in about an hour.

Eva Sheie (12:45): Okay.

Kristen (12:49): I looked in the mirror and like, for a few days and looked at myself and I just saw because of how it wasn't even so much that it didn't have an effect because the cancer was gone. It was taken out. It was more that I went through all of this and my body was wrecked. It's getting better, but I just don't see myself when I look in the mirror anymore. I think I went through all of this... Really? And it didn't have an effect? The tumor was 3.5 centimeters, that was the final size. In two MRIs, and he explained MRIs can be inaccurate. Two MRIs showed between 2.4 and 2.6 centimeters. In my mind with this data that I had, the tumor grew while I was busy going through all this and it may or may not have, but my hope is that there was some effect on any micro cells that might have been floating around because... I'll go back and review.

Kristen (14:02): I initially did not want the chemo and fought my oncologist about it and didn't understand why shrinking the tumor was something that would be important if I was just going to have a double mastectomy and take it all off. We didn't have to worry about margins in a lumpectomy or something. Right? She said, great question, she said, I'm hoping to cure your cancer, not just save your life. Any micro cells that might not be seen on a scan that could be floating around, we want to kill because if we don't, they come back somewhere else, it's immediately stage four. There's no way she's going to be able to tell me if that happened or not. I'm guessing she's going to order some scans.

Eva Sheie (14:51): Does that leave you feeling a little bit like cancer treatment is just a crapshoot?

Kristen (14:55): Completely. Unless it's something tangible like surgery. What Dr. Rivera did emphasize is that with my type of cancer, I'm estrogen positive, progesterone neutral or negative, and HER2 negative, those are the receptors. They call it endocrine therapy and take away any estrogen in my body because they know that my type of breast cancer responds to estrogen. Who knows if the estrogen patch that I had on for four years after menopause helped to cause this. There's a patch called Estradiol. It's a synthetic estrogen and took progesterone to just kind of even out the hormones. I had that for four years until I was about 54. Then I just finally was like, "I don't think I need this anymore." And took it off about, oh, a year and a half ago now. That's direct synthetic estrogen. And so, who knows. I would think that might be feeding it or any micro cells.

Kristen (16:02): Dr. Rivera looked at me very, very closely and said, "That is going to be the key, that kind of therapy." He said, a lot of people reject it because there are so many negative side effects and serious side effects. I don't know the one that they're talking about putting me on, but Tamoxifen is one of the popular ones. Some of the side effects with Tamoxifen are heart failure, blood clots, stroke; those are the big ones. Some people don't have any issues at all. He told me at that point, he said "I'm a cancer survivor." I didn't know that. That explained to me the empathy and the directness that he had. He said, "But I will tell you that the endocrine therapy is something that's really, in my opinion, going to help the cancer from recurring." And I also have an appointment on Friday with my radiation oncologist.

Kristen (16:57): So this is a week of finding out a lot of things. But I can tell you that this morning as I was reviewing my day and thinking about the conversations I was going to have today, it's like I just want to catch my breath. I don't want to talk about radiation. I don't want to talk about other therapies. I've only been out of surgery two weeks and I look at my breasts and they're not my breasts. They're going to be fine, but I have these expanders that are painful and that's the physical piece. I'm going to see my plastic surgeon after the oncology visit and hopefully I'm getting my drains out and I may be getting my stitches out. That's going to be something to look at. It's going to be different. That's proof that I had breast cancer. My last day of chemo was June 2nd, I'd already had three appointments to talk about the next thing we were going to do.

Kristen (17:59): June 22nd was my surgery. Here we are, what is today? The 7th of July. I was talking to a friend of mine and I was crying. He said, "Can you just pause for a month? Can you just tell them you don't want anything for a month?" I said, "I don't know. Maybe I'll ask." Part of this is the technical stuff right now with my body is that my plastic surgeon, Dr. Pacella is...We're kind of on a fast track to fill these expanders because they're going to want to start radiation therapy in the next month. I think part of that, again, is in case there are micro cells that are on the chest wall. The reason that radiation is highly recommended is because of the skin involvement and they did a skin preserving mastectomy where they saved as much skin as they could. I think they're wanting to hit it quickly and hit it hard.

Eva Sheie (19:03): I'm impressed with the skin saving part and I could see that right away.

Kristen (19:07): When I showed you?

Eva Sheie (19:09): Yes. Thank you for showing me. The outside looks exactly the same. It's like they just took your nipples away.

Kristen (19:16): Yeah, yeah.

Eva Sheie (19:17): It's really what it looks like. It's really impressive.

Kristen (19:20): It really is. It was interesting because I have some little moles or freckles and stuff on my chest and down below where my trunk begins. And I remember when I very first had the courage to look, I was like, "Oh, there's my moles". It's still my skin. It's not a completely different body or chest that I'm looking at. I don't think the answer to radiation is going to be, "Yes, we can take a pause." Because I'm battling internally about this right now, because it was also extremely important that we start chemo right away. And, I see what happened with that.

Eva Sheie (20:01): Is your trust or your faith in the oncologists, has it shaken at all?

Kristen (20:07): No. My faith in the oncologists and in my caretakers has not wavered whatsoever. It's been a reality check and there's probably an algorithm. They put in my age. She's 55, she's postmenopausal, she's had her period at this time, and all these factors and an algorithm comes up and they find out it's stage three C. Well here's the protocol. Here's what we have seen works best historically. This is her best chance for survival. One thing that a friend of mine, this made me feel better, I was upset about it and my friend writes back, "Hello, you're Wonder Woman. Of course you're not going to succumb to chemo."

Eva Sheie (20:56): Exactly.

Kristen (20:56): It was really cute. But, here's the best part about the chemo not working is that it's never on the table again. That's never part of my treatment and my port never goes back in. I don't have to worry about that ever again because that was one of the things I was concerned about if there was lymph node involvement, if they would solve that with chemo. And it's not on the table, which is great. What I had to learn to see is that the chemo and the cancer isn't just about me. It's about the people around me and what they're also gathering and learning from this journey. Through this chemo, it's not about what I got like about the food that people sent me. It was about the care and the unconditional love and people who I had no idea cared about me were there.

Kristen (22:02): It helped them to be of service and I'm stronger because of it. If there's anybody who needs their hand held during it or needs to understand what it is, I can tell them and I can help them. I joke with my friends, I'm getting the full MD Anderson experience. I'm not just getting this, this, or this. I'm getting the full MD Anderson experience. Unfortunately, I'm going to be really well versed in all of this and that's not a coincidence. There's somebody I'm supposed to help and somebody's hand I'm supposed to hold. I'm okay with it now. My body is going to bounce back. My hair's already kind of, amazing.

Eva Sheie (22:54): It's really cute.

Kristen (22:55): Thank you.

Eva Sheie (22:56): If you kind of think back about these last two weeks, since surgery, of the things you could control, is there anything you would go back and do differently?

Kristen (23:10): I would've not been so gloom and doom about the chemo not working and about being concerned about my mortality before I knew all of the information from the pathology report.

Eva Sheie (23:31): Getting more information or better context? I don't know if you could put all of that on yourself.

Kristen (23:37): I think that probably with the meds I was under, I possibly misheard. In my brain, I heard "All the lymph nodes we biopsied were cancerous." Which was true, because he just biopsied one and he may not have even said that. But that's what my brain heard. I don't think that anything could have been done differently. I really, really admire and respect the information and the candidness of my caregivers. That's something also that has to do with my personal situation. That's something maybe they would've told my husband.

Eva Sheie (24:16): Not necessarily that it would've been a husband, but I think one of the themes and one of the really big ways that what we're doing here is going to help others is specifically for people who have to go it, not alone, but without a partner.

Kristen (24:34): Right.

Eva Sheie (24:35): You have many partners, but you don't have one person who's-

Kristen (24:39): A primary. I'm used to taking that information on and I could have just let my sister and Jerry hear it and have them repeat it back to me. I took the role on of the information disseminator and wanted to explain to them what it meant. Jerry said she went home that night and she looked it all up and she said to her husband, I never have a thing to complain about again. It could have spread. I'll be honest. I don't know right now. If it spread, then I'll handle that. I think that I set myself up in each stage to think, "Okay, chemo killed all the cancer and all the microcells. Sweet." Then, "The mastectomy got all of the cancer and there's no more cancer in my body and I am cancer free right now."

Kristen (25:41): I asked Dr. Rivera at the appointment. I said, "Am I cancer free?" He said, "As a cancer survivor, I can say this, we are cancer free until we're not." I said, "Did the lymph node involvement increase a chance of recurrence?" And he said, "Yes." My fear right now is that those micro cells are not micro anymore because it's been six months since we did that scan and if the chemo didn't have the effect that I wanted it to, or that I hoped it did.

Eva Sheie (26:21): I hear a lot of fears and you're really good at articulating those fears. But what you always have that's stronger than the fears is that optimism that.. My husband calls you Pollyanna... Because of that, that is the theme that really runs through the last six months. That even when you have the fears, you're still choosing to be optimistic about the outcome every time.

Kristen (26:49): Thank you for observing that because I try and I'm glad that it relays when I speak.

Eva Sheie (26:57): It does. I know it's a choice you can make, you can choose it or you can reject it and you keep choosing it.

Kristen (27:05): Yeah. Thank you for seeing that. I don't know how else to operate. I don't mean that like, I'm this great person who has this strength that operates that way. It's just, I don't know how to walk around without crying all day unless I do that. I have to really hand it to Dr. Rivera, that he didn't give me a number. He said he could say all kinds of things. He said, but the thing is right now, you're cancer free until you're not. I think that any mistake that I made was thinking that any of these things are concrete and that there is a black and white in cancer. In my life, I have to hold onto that, there is that. What that means also is I have a little control over it. Right?

Kristen (28:01): I have some control. I can choose my diet. I can choose to keep going with my care. I can choose not to. I feel like I have lots of support and I have a lot of things in place. I hope that no one takes that as like I got all this support, I'm this girl who's so popular. It's not that. It's that when you're single and you're making all your own decisions, no matter how many people love you, you go to bed at night alone. When you need that big hug, it's not always there. It's scary and it's not because I need a partner it's I need a shoulder. And I can not tell you how many people have made sure I know that I am not alone in this journey.

Kristen (28:54): They will come over and hug me and they will do whatever I need at any point in time. It's through being vulnerable and honest and asking for help that that's come about. You know me, I am not someone to ask for help and it's not my pride, it's my I'm just going to go do it. I'm just going to go take care of it.

Eva Sheie (29:16): You're stubborn.

Kristen (29:21): Am I?

Eva Sheie (29:23): I mean, it's one of your best qualities, but yeah.

Kristen (29:28): It's just, I just figure, I'm just going to take care of it.

Eva Sheie (29:30): Especially when you know that something is ... A wrong needs to be righted, I think you're pretty much the most relentless person I've ever met.

Kristen (29:39): That's a true statement. I'll give you that 5000%, that's one of my strengths and weaknesses. When I saw an injustice, just a small one, I always had to take care of it. Then when the big injustices came, those were my practices for the big ones. Anyhow, so with cancer, I'm realizing that I can not be as concrete. My caregivers are, they're people like us and their expertise is cancer. I don't feel like my oncologists got it wrong. I just feel like this therapy's off the table now. It's done. I am healthy. I am strong as much as I don't feel strong right now physically because I'm healing, but all my labs point to that I'm on the mend. I get frustrated about the weight that I've gained and I just look at it and I'm like, but you're healthy.

Kristen (30:40): Whatever I did kept me healthy through it. This body, I can't look at it and say, why don't you fit in those pants that I really want to wear today? Why is this chin still here? It wasn't there before chemo. All I can do is say, thank you for taking me through this. Oh my God, what can I give you? Look at what you've been through. So, we're getting a massage next week. As women, we're so hard on our bodies and ourselves about our bodies. I've learned to give my body a lot of grace and ice cream now and then.

Eva Sheie (31:19): As soon as you're ready to talk again after these next couple of appointments, let's pick it back up.

Kristen (31:24): Yes, absolutely. I love you. I'll talk to you soon. Okay?

Eva Sheie (31:27): Love you too. Bye.

Kristen (31:29): Okay. Bye honey.

Eva Sheie (31:33): Thanks for listening to Breast Cancer Stories. There's a link in the show notes with all of the resources mentioned on this episode and more info about how you can donate if you're facing a breast cancer diagnosis and you want to tell your story on the podcast, send an email to hello@theaxis.io. I'm Eva Sheie, your host and executive producer. Production support for the show comes from Mary Ellen Clarkson and our engineer is Daniel Croeser. Breast Cancer Stories is a production of The Axis. theaxis.io.