July 8, 2022

Day 526: The Last Night Before The Last Surgery

Day 526: The Last Night Before The Last Surgery

On the eve of the final reconstructive surgery, which coincides with the 1-year anniversary of her mastectomy, Kristen reflects on how far she’s come and how many things are different from what she expected.

On the eve of the final reconstructive surgery, which coincides with the 1-year anniversary of her mastectomy, Kristen reflects on how far she’s come and how many things are different from what she expected.

Finally relenting to the damage in her feet, she applies for a handicapped placard and shares her relief over no longer having to schlep across enormous parking lots while protecting her chemo toe and tolerating persistent pain in her feet.

While looking forward to the final surgery and excited about the aesthetic part of the surgery, there’s a lingering sadness over how far she still has left to go to return to “normal.” The process of letting those expectations go continues to be a challenge, mixed with joy and gratitude for the good that has come with so much bad.

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Meet Kristen’s doctors: surgical oncologist Dr. Louis Rivera, hematologist and oncologist Dr. Sonia Ali, plastic surgeon Dr. Salvatore Pacella, and radiation oncologists Dr. Anuradha Koka and Dr. Kenneth T. Shimizu.

About Breast Cancer Stories

Breast Cancer Stories follows Kristen Vengler, a 56 year old single empty nester in San Diego, from her diagnosis of hormone positive breast cancer through chemotherapy, mastectomy & breast reconstruction, radiation, and whatever happens after that.

In 2020, Kristen moved from Austin to San Diego to be near family and start her life over after a life-shattering workplace trauma. A few months later she had that terrifying moment in the shower we all hope we never have.

From her breast cancer diagnosis, through chemotherapy, breast reconstruction, and radiation, we experience each new milestone as it happens. This podcast is about what happens when you have breast cancer, told in real time.

Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt

Breast Cancer Stories is a production of The Axis.



Eva (00:08): This is a story about what happens when you have breast cancer, told in real time.

Eva (00:17): Well, we're back. It's a big anniversary. You want to start there and tell me?

Kristen (00:22): Sure. Hello, everybody. Yeah, it's been a little while. It's a huge week. On the 22nd, which is two days from today, was my mastectomy. I think it's a nice kind of finish that tomorrow on the 21st is when they're finishing my reconstruction. So, like we talked about, they did the demo on the 22nd of June in 2021, and the build-out will be complete exactly 365 days later. And, I think it's just so interesting because we were able to have day 365, just by chance, with Dr. Ali after starting chemo, and so it's kind of nice that the universe keeps handing us these cool dates. So, it's a pretty big deal, full circle.

Kristen (01:15): It's very weird to look at pictures of myself back on that date. And we had a "chemoversary", I guess, finishing "chemoversary", and that day was so emotional for me. And you don't realize when you're going through the treatments and you're going through all of the processes that you're not processing it. You're just going through it. And you're going to the appointments.

Kristen (01:41): You think you're processing it because you're emotional, or you're whatever. But after the fact, it was really... I don't want to say disturbing, emotional is the only way that I can say it, to look at myself bald, and the progression, and to see my hair barely a millimeter long and then getting longer.

Eva (02:03): If it helps, I can't look at pictures of you a year ago, either. It's too hard.

Kristen (02:06): Really?

Eva (02:07): Yeah. I can't.

Kristen (02:10): At the time, I didn't realize how kind of disturbing it was because I was just... I think I was happy that I was bald, but I didn't look like a chemo patient because I still had eyebrows and eyelashes for a while, until the later, later, later times. But, I was just happy that I didn't look as sick as I thought I would because I was so fearful that I would just look like I was dying.

Eva (02:36): You didn't really ever look like you were dying. You probably just felt like it all the time. Which was worse?

Kristen (02:46): You know, I have to say that with chemo, it was hard, but I think because my labs and my body were pretty strong through it, with the exception of some of the bumps that we had talked about, I feel like it was the after effects that really made me feel more like I was dying. And radiation burns, truly.

Kristen (03:08): But I don't know that we had this conversation, and I don't know that I could have had this conversation. And it really came to light as I moved. I gave away a lot of things. I don't know that I thought I was going to be rebuilding my life.

Eva (03:25): You gave away all your furniture because you didn't think you were going to need it later?

Kristen (03:28): Mm-hmm. Yeah. I really didn't know if I was going to make it. I would never, ever, ever have told anyone on the podcast that, or told you. I didn't know I was going to get emotional. With having stage 3B cancer and lymph node involvement, if someone were to tell me that was their situation, I wouldn't think that they were going to be alive very much longer. Because when you hear it's in your lymph nodes, to me it sounds like a death sentence. And I'm here to say to everybody, it is not. Absolutely it's not. However, the perception is still there, and your mind still ticks away.

Eva (04:19): That's the thing that makes everyone go, "Oh, it's in your lymph nodes?"

Kristen (04:24): Well, and you know what? I was having this conversation earlier this week. There's a cancer called lymphoma, which is cancer of the lymph system. I believed that if you had lymph node involvement in breast cancer, you automatically had cancer of your lymph system, which isn't true.

Kristen (04:49): And so, when you hear lymphoma, that's a whole other conversation. But it's something that's going throughout your whole body, throughout your whole system. It's like it's in your veins, kind of. We talked about the lymph system with Christine.

Kristen (05:04): But I think there's a lot of perceptions based on a lack of information, and it's information. Why would you have it, if you didn't have cancer? Why would you dig into that that deeply, unless you are intimately involved in someone's life, or closely involved in someone's life, that had cancer? And so, I know you probably remember when we did the episode almost a year ago, of This Isn't the Outcome We Wanted.

Kristen (05:33): And I woke up with three drains, knowing that there was lymph node involvement. At that moment, I really didn't think I was going to be making it. I'd probably be here today, but I thought I would be in a lot worse shape. I certainly never thought I would have a scan, like I did a few months ago, that said I had no evidence of disease.

Kristen (05:55): I don't think I articulated, at that point in time, how afraid I was, and how elated I also was, to find that information out. And so, I really have had to rebuild my life because I really didn't know if I was going to have one.

Kristen (06:14): And I know that sounds so stupid and dramatic. You and I have gone to some dark places, and we've gone to some highs, and had some lows, and all of that, with my journey. But we were never together recording a podcast when I was sobbing for days, not knowing what my life was going to look like.

Kristen (06:37): And we also talked about how frustrated I've been with my feet, and with my mobility, and all of that. And I got my handicapped placard this week, and I learned that with a handicap placard in California, you can park at any parking meter and you don't have to pay.

Eva (06:55): What?

Kristen (06:56): Oh, I know! See? Money in the bank. Because of my mobility issues.

Eva (07:03): Oh, everyone's going to want you to drive them everywhere because-

Kristen (07:06): Princess parking for life. People listening to that are going to be like, "Oh, okay. Are you that handicapped placard abuser girl?" But no, I promise. If you were to see me get out of a car, you would be like, "Oh".

Eva (07:21): How hard was it to get the card?

Kristen (07:23): Super easy. Well, if you have a disability. I went to an appointment, and the physician's assistant... There's a form that I downloaded from the DMV. Now, I'm sure every state is different, so this is California. It was a form I downloaded. I had to have her sign it and write the diagnosis, and all of that.

Kristen (07:43): And that was a little bit of a chore because I hadn't seen that physician's assistant before, and she's one of the few people that I have experienced at Scripps who is in a hurry. And she actually made the comment of, "I don't know you very well. We're going to have to handle this later." And I was like, "Okay." And I guess she got to thinking about it and felt kind of bad, so she ended up filling it out for me, which was nice that she did that.

Kristen (08:10): Another thing I didn't know, you can go to AAA if you're a AAA member, turn it over to them, and they will hand you your handicapped placard right there.

Eva (08:20): What do you mean?

Kristen (08:21): So, AAA auto?

Eva (08:23): Yeah. They can issue you one?

Kristen (08:26): It's all the DMV services.

Eva (08:29): Instead of the DMV, you can just go to AAA?

Kristen (08:32): Yeah.

Eva (08:34): Why? Why? That's wild.

Kristen (08:36): I know. Because... Well, here, at least in California.

Eva (08:39): They subcontract with the-

Kristen (08:41): They do everything that the DMV does.

Eva (08:44): Really?

Kristen (08:45): Yeah. The only time I've been to the DMV is to get my bald driver's license because I had to go there because I was back in the state. Right?

Kristen (08:55): So, I was surprised I Googled it, and I was like, "That's just too easy." And so, I walked in and I said, "Do you guys do handicapped placards?" And they said, "Yeah." And I was like, "What?" But this girl was sitting there talking to me about, I don't know, something. Oh, I know what. She saw my driver's license. And I said, "Oh, that was during chemo," and then we started talking about breast cancer, and then we started talking about her sister, and then I gave her some business cards. But we were talking about breast cancer. She's like, "Check, check, check. Okay. And here it is."

Eva (09:24): It's actually a little refreshing to find out that if somebody really is in a bad situation and needs help, that they will help you quickly. Because that's not our expectation with government services, ever.

Kristen (09:39): Ever, ever. And Natasha had said that when she did her palliative care work, that she would write those regularly. So, I was surprised. And the thing is, too, is I had one of these when I had my ACL replacement for three months. This is for life. So, it's nice to know I don't have to keep going in and getting...

Kristen (10:02): That was also a realization that I had to embrace. And so, if there are people out there who have mobility issues, even if you don't want to embrace them, I don't want people to be afraid of the realization. Because that was a journey I think you and I were talking about at one point, is me coming to the realization that I couldn't walk up the stairs at my beautiful place in Del Mar, and that I was tripping and that I was falling.

Kristen (10:32): And at 56, 57 years old, you never... You work all your life to stay in some kind of shape so you don't have mobility issues. So, I'm not comfortable with them, I don't like them, but I've embraced it.

Eva (10:47): Well, imagine if you had not gotten the card and were trying to walk further distances and hurt yourself more.

Kristen (10:55): Yeah.

Eva (10:55): Because you were being stubborn about not getting the placard.

Kristen (10:59): Completely, completely. And also, with what I do with Sammy, it is remarkably easier for me to not walk from row XXWQR256 at the San Diego Zoo to go in for an hour and then leave.

Kristen (11:17): And again, it's not about what I do for a living, it's about actually being able to move through my life. And there are a lot of things, a lot of times, I did not stop at places to do things, to get a meal, to go in and get a pedicure, whatever, because I couldn't find parking.

Eva (11:36): Right.

Kristen (11:37): And I was just like, "I'm done, I'm done. Never mind. I'm not going to return this to Amazon right now. I'll just keep it. Forget it." So, that was new this week, and it's been a godsend. I have been advised, though, to keep it out of sight because people break into cars to steal those.

Eva (11:51): Oh? Yeah. I can see that. Well, tomorrow is a big day. Your final surgery.

Kristen (11:59): Final surgery.

Eva (12:01): Today, are you going through your usual pre-surgery routine? What are you doing?

Kristen (12:05): I am. So, I have all my prescriptions filled. I am going through putting all the drugs in my little case. I am actually staying over at my nanny family's home, even though I have my wonderful house here, now because they are out of town for a month and I am watching their dog. And I have Jack. It's much easier for me to open their sliding door and let the dogs out than it is for me to put them on leashes and walk them around here.

Kristen (12:37): So, what I've been doing is making sure that I have everything that I need. Pretty much know it. My pajamas, my open-front pajama shirts, robes, all the goodies. Yeah. Kind of a surgery pro now, which is weird.

Eva (12:55): What is Dr. Pacella doing tomorrow, and how long is it expected to take?

Kristen (13:01): So, what he's doing tomorrow is putting the finishing touches on the reconstruction. So, the implant that he put in, we talked about it being an ultra-high profile, right? Porn stars. Porn star boobs, basically, but they're not porn star on me. They just look normal. So, what he had to do is he had to go in and just make a form, a breast form.

Kristen (13:23): And so, what they did with the mastectomy is they took out all the tissue, all the fat, everything. So, basically, it's my chest wall, my pec, and then there's the implant in the skin. So, what he's going to do is he's going to take some fat from another area, which I have several for him to choose from, and he's going-

Eva (13:41): Good to have options.

Kristen (13:43): We have options.

Eva (13:44): Yeah.

Kristen (13:45): Lots of options. And he's going to insert that underneath the skin of my chest near my breast. One thing that I hadn't thought of that he talked about last week is, he said he's going to be sure to put some fat where my port was, where my port scar is, because there's actually an indentation. So, basically, he's doing some, the technical term is he's doing some liposuction from one area and putting it into the chest area to contour. And I could just not have this done. It's not something that is an essential surgery. It's not necessarily elective, but it's part of the breast reconstruction.

Eva (14:24): Did he say how long you'll be in the OR for?

Kristen (14:27): An hour to an hour and a half.

Eva (14:30): Not too bad. Mm-mm. Nope.

Kristen (14:32): It's outpatient. The surgery is at 8:45, and I was just talking to the nurse, and the realistic time for pickup is between 11:00 and 12:00.

Eva (14:43): You've had a lot of general anesthesia in the last... Does that ever worry you?

Kristen (14:50): Yes. Yes, it does. Well, and here's the thing, is that when I went to see Dr. Patella last week, he said, "How are you feeling?" I go, "I'm feeling a lot better. Just in time to get cut on again." And he started laughing. But yeah, in fact, I did make a phone call today to Brian, my son, who I still haven't talked to, but I called him and I said, "Hey, just want to let you know, I'm doing number three of my third reconstructive surgeries, and I'm going under but I plan on coming out. But just wanted to say hi and I love you, in case I don't."

Eva (15:22): Oh my gosh.

Kristen (15:25): I mean, of course I'm healthy. Of course I'm going to come out of it. But, yeah, I worry about all the chemicals and just all the swelling, because they talk about that your body swells, and the inflammation is to protect your body. And it's been doing that now for a year. But on the good side, I've lost 17 pounds, which is from the highest point that I was with inflammation and swelling and all of that. I still have quite a bit to go, but... So, that's great. A lot of swelling has gone down. I still have a lot of edema in my feet and legs, and I'm sure that's because of the foot and leg pain.

Eva (16:00): Oh, sure.

Kristen (16:01): But the inflammation up here has gone way down. And it really speaks to the work that Christine has been doing with the lymphedema stuff, too. So, yeah, it concerns me almost how nonchalant I am about the surgery. And he said that there could be a little bit more pain this time, just because of the sites where they're going to be taking it, the fat.

Eva (16:23): A good kind, though.

Kristen (16:25): Yeah.

Eva (16:27): You want to take fat out? Okay.

Kristen (16:29): Okay.

Eva (16:29): All right.

Kristen (16:30): Okay. Keep going. I'm sure he's going to have a Sharpie, and he's going to mark things up tomorrow. I'm going to have a spare Sharpie in case he runs out of ink, in case he wants to take any more.

Eva (16:41): Will you try and get some photos of the markings?

Kristen (16:44): I will.

Eva (16:45): That's always interesting.

Kristen (16:46): Yeah. I will. I'm really looking forward to having this full-circle situation come to a close. I was talking to a friend of mine this morning and I said, "Yeah." And I was explaining the whole 365-day thing. And she's like, "It's been a year?" And I was like, "Yeah." She's like, "Wow." And I said, "Yeah, it doesn't seem like it, but it does." Because with those expanders, I never thought I was going to really get them out. I just thought they were just faking me out. I didn't think it was really going to happen.

Eva (17:21): It's been even longer since the whole thing started. It's like 19 months, isn't it?

Kristen (17:26): Yeah. Everybody feels like they were in a fog during the pandemic. And where did the time go? I really feel like that. And it's weird to think about what my life was like pre-cancer. It's been a whirlwind, but it's also been such an everyday reminder, endeavor, whatever. And I don't wake up actively thinking, "Oh, I have cancer." Or, "Oh, I had cancer." Or, "What do I need to do?"

Kristen (17:54): It's more of the, when I step on the ground, my feet go "Ha ha ha." Or, not really that. But, yeah. And also, doing this podcast. It's not for everybody to step into this and talk to people on a regular basis about what they're going through.

Kristen (18:14): And so, that's a choice that we made on this, too, to stay thinking about it. But I have to say that after talking to Natasha today, she was teary eyed that she said she couldn't have done this without us. She doesn't know how she would've made it through without us.

Eva (18:33): Really?

Kristen (18:35): Yeah. And she was giving back. And so, we both get very teared up about what we've uncovered, and what we know about this world, and how many people we've been able to help.

Eva (18:48): I connected with a friend that I haven't spoken to in more than 20 years, because he has thyroid cancer, and he started listening to us. Texted me yesterday-

Kristen (19:00): Oh, wow.

Eva (19:01): ... to say how much he enjoyed this most recent episode, which was Theresa Brown.

Kristen (19:06): Wow.

Eva (19:07): And I'm not talking about somebody with a big teddy bear approach to life. He's a retired cop who is just as prickly as you could be.

Kristen (19:21): Wow.

Eva (19:22): I mean, I can see through it, so I know he's not really like that, and I just roll my eyes. But we made a difference for him, too. And he's going through oral chemo again, now.

Kristen (19:34): Wow.

Eva (19:36): Yeah.

Kristen (19:37): Well, the other piece that I don't think that we had really expected, we were honored that nurses were listening and finding value and validity in our conversations, because I don't feel like we're super technical. I mean, we go in and dig in to find things out. I mean, I'm a nerd. I have to know the answers to things. But when I had a follow-up with my primary care physician, and she said she wanted posters for her office, she hadn't even started listening to the podcast yet and she was teared up. We were on a Zoom call.

Eva (20:13): You weren't in person, you were on-

Kristen (20:15): We weren't even in person. And she said, "I really think people need to know about this. As primary care physicians, we have rotations that involve cancer, and we have what we read. But I think that hearing what it's really like to go through it changes the way we look at our patients."

Kristen (20:34): And you have to remember that she's the one who very first saw the cancer. She's the one who referred me. And so, I feel like I didn't see her, until I was bald, again. So, here she sees this person come in, writes the referral for the mammo, and she's on her way. And then, here I am back on a Zoom with no hair.

Eva (20:57): Well, how are you going to treat yourself when you're done with surgery tomorrow? Do you have anything... Any ice cream planned? Do I need to send the ice cream truck to your house?

Kristen (21:06): I need to call Dan. Or it may be later in the week when I can actually drive somewhere, and I think get a pedicure.

Eva (21:16): Oh, yeah?

Kristen (21:17): We got to talk about two things. One is that my right armpit now stinks again.

Eva (21:24): Is that the same one or a different one?

Kristen (21:26): Mm-mm. The right one, I think they radiated the stink off for a while, for six months or seven months, and now the stink is back.

Eva (21:36): Ew. Okay, good.

Kristen (21:38): It's not... Well, I mean, I wish it wasn't. That's one of the weird things I think I would've liked to have stuck.

Eva (21:46): Attention audience, if anyone else out there has had this happen to them, we want to hear from you.

Kristen (21:52): My friend Annette said that it did happen to her. Well, hers went away. I don't know if hers came back.

Eva (21:58): Actually, I'm pretty sure we should do a strange symptoms compilation at some point, so.

Kristen (22:03): I think so, too.

Eva (22:04): If this is you, and you're listening today, please send us a message at our-

Kristen (22:09): Seriously.

Eva (22:11): ... Breastcancerstoriespodcast.com. Thanks.

Kristen (22:13): Yeah. Tell us what weird stuff happened. But here's the thing. It's not just like, "Oh, I have a little something," right? It's like, "Wow."

Eva (22:22): Oh, gross.

Kristen (22:23): I mean, it's like a field worker out there, or the worst lacrosse armpit.

Eva (22:31): Lacrosse bag.

Kristen (22:33): Oh. That's the worst. Oh my God. The other thing is that my chemo toenail came half off on one foot. It's not fully off. So, I have baby blue toes, and on my big toe on my right foot, I have a half baby blue toe, because it came off.

Eva (23:04): Is it tender?

Kristen (23:06): Yeah.

Eva (23:07): Aw.

Kristen (23:08): It was super tender for the first week after it started coming off. Because what happened was, it was super tender. It hurt on the top, and I bumped it on something, and it just started gushing. And what that was was the blood that had collected underneath the nail, which I thought that was not alive blood anymore or something. But so, that started gushing, and I was like, "What is going on?" And so I trimmed it back to where... I mean, it didn't hurt to do that, but then it was super tender. And so, I keep it covered, but I'm also trying to keep it in the air, and have banged it a couple times and been in tears because of that.

Eva (23:48): You need a helmet for your toe.

Kristen (23:53): I have lost toenails before. I did a marathon back, back, back, a long time ago, and lost eight toenails because of the fatigue on my feet. And I'm used to your toe beds feeling tender, and then your toenail falling off. But this is different. This was like the top part was thrashed. And then weird, my fingernail beds, you know how if you have dirt or something under there, it's kind of in a straight line under there?

Eva (24:24): Sure.

Kristen (24:25): Well, I have ridges in there now.

Eva (24:27): Weird.

Kristen (24:28): From the chemo. I know.

Eva (24:29): So, no one has invented a toenail helmet yet. I'm pretty sure we got a million-dollar idea.

Kristen (24:34): Okay. Let's do it.

Eva (24:36): Well, we're not done. We're coming back to talk to you in two days after you get out of surgery.

Kristen (24:42): Yeah. Yep.

Eva (24:43): This is part one.

Kristen (24:45): Part A.

Eva (24:47): Best wishes for tomorrow, and we'll be thinking of you.

Kristen (24:50): Thank you.

Eva (24:51): We'll check on you. Who's sending out messages, anybody?

Kristen (24:54): My sister. No, actually, she was okay with sending them out. Either my sister or my friend Brian. And so, both of them are on call for that tomorrow. So, they are reliable, and they'll be sending out information.

Eva (25:07): Okay.

Kristen (25:07): Okay. Love you. I'll talk to you later.

Eva (25:11): You too. Bye.

Kristen (25:11): Bye.

Eva (25:14): Thank you for listening to Breast Cancer Stories. To continue telling this story and helping others, we need your help. All podcasts require resources, and we have a team of people who produce it. There's costs involved, and it takes time.

Kristen (25:29): If you believe in what we're doing and have the means to support the show, you can make a one-time donation, or you can set up a recurring donation, in any amount through the PayPal link on our website at breastcancerstoriespodcast.com/donate.

Eva (25:43): To get the key takeaways from each episode, links to anything we've talked about, and promo codes or giveaways from our partners, sign up for our email newsletter. If you've been listening to us for a while, you know we are cynical Gen X-ers who approach everything with a healthy dose of skepticism, so you can also expect that from us in our newsletter.

Kristen (26:03): You'll get notes and thoughts from me related to each episode, and links to the most useful resources for all the breast cancer things. So, if you have chemo brain, you'll be able to just go read your email, find anything we talked about on the podcast, without having to remember it.

Eva (26:17): The link to sign up is in your show notes and on the newsletter page at breastcancerstoriespodcast.com.

Kristen (26:23): We promise not to annoy you with too many emails.

Eva (26:28): 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. the axis.io.