Gillian Lichota had to juggle the daunting combination of pregnancy and a mastectomy with Stage III breast cancer. Gillian dealt with both, achieved survivorship and went on to establish a foundation designed to aid young women diagnosed with breast cancer.
Gillian and her husband, from Washington, DC, had tried for three years to conceive a child without success, so they turned to invitro fertilization in order to conceive. After immediately after starting on IVF, Gillian noticed a lump on her right breast. When in the shower, she did a self-exam, felt the lump and noticed a burning sensation. She was concerned, but as told while going through IVF that breast tissue can become dense and can become painful, so she shouldn’t be surprised by either condition; but when the IVF stopped, the pain continued.
Gillian Lichota made an appointment with an OBGYN and at the time they were going to test whether the embryo had transferred, but learned through an ultrasound that she had all the characteristics of breast cancer. She was then sent for a biopsy, which confirmed she had Stage III breast cancer, Because the cancer was estrogen-driven and Gillian was now pregnant, there was a great concern for her life.
Gillian was in a state of shock. However, she was encouraged knowing she had a topnotch care team, helping to sort out a very difficult. Armed with their expertise and information, she chose to move forward with a mastectomy while pregnant.
Such a decision posed a significant risk for Gillian Lichota. She had a history of miscarriages. As a result, her team had to get creative in terms of all aspects of her care, including anesthization so that it didn’t present a risk to the fetus.
She was presented with three choices. Gillian could go forward with the pregnancy and wait until after her baby was born to address the cancer, but because the estrogen was going to increase over time, it created a huge possibility of death with the prospect of the cancer spreading. She could have aborted the pregnancy, but after years of trying to get pregnant, she didn’t like that option. That’s why she went with the mastectomy, then starting with chemotherapy after 20 weeks once the chemicals cannot pass the placenta. That seemed like the best option at the time although Gillian later regretted it.
She had to go through two phases of chemotherapy, one during her pregnancy, and another about three weeks after her son was born. She chose to be focused on her pregnancy, but that was a challenge, trying to nurture this life inside of her body at the same time the medication is trying to kill cells. One her baby arrived, things really became difficult. She was experiencing acute pain while trying to be a new mother. In addition to the pain, there were the side effects. She experienced hair loss and cognitive issues.
Eventually the surgeries and treatments ended and Gillian Lichota wanted to get back to feeling good about life, physically, mentally and from a wellness perspective. There were residual side effects from the chemo and the surgeries, but she worked to get past them. One who loves the outdoors, she joined friends and scaled Mt. Kilimanjaro.
Gillian’s experience made an impression. It left her wanting to help other young women diagnosed with breast cancer because the support groups she encountered seemed to be geared toward women in their fifties and sixties.
She left her career as a marine biologist, and founded the iRise Above Foundation. The advent of COVID reduced the amount of face-to-face interaction, but that accelerated the development of the Foundation’s website.
Additional Resources:
iRise Above Foundation: https://wwwiRiseAboveFoundation.org
TRANSCRIPTION
Bruce Morton: Welcome, this is the Cancer Interviews podcast. I am your host, Bruce Morton. On this episode, we have the story of a woman whose breast cancer journey did not end with survivorship. She founded the iRise Above Foundation, a support group for those on their own breast cancer journeys. She is Gillian Lichota of Washington, DC, and Jillian, welcome to Cancer Interviews.
Gillian Lichota: Thank you for having me, Bruce.
BM: It is our custom to start from the same place, Gillian, and that is to learn more about your life, exclusive of your cancer journey. So, if you would, tell us about where you are from, what you do for work, although I suspect we will be hearing more about that in minutes, and what you like to do for fun.
GL: I am originally from Ontario, Canada, but I moved to Washington, DC in the early 2000s, 2002, to work at the Smithsonian Natural History Museum.
BM: And when there is time for leisure activities, what do you like to do?
GL: Well, my favorite place is to be in the great outdoors. I love hiking and climbing and doing all sorts of fun things like scaling mountains. In addition to that, my favorite thing is to be next to the water, on the water, in the water, under the water.
BM: Now in terms of your cancer journey, unfortunately, everybody who is on one has a starting point. For you, when did you notice something wasn’t right, something was abnormal?
GL: My husband and I, we were trying to conceive a child for a good three years, which led us to doing IVF in order to conceive. In the process of doing that, I noticed pretty much overnight a lump form on my right breast, and so when I was in the shower, I noticed during a self-exam there was definitely a lump and a bit of a dimple forming and quite a burning sensation. That led me to investigate pretty quickly to find out why it was happening and what it was, because I had no family history of breast cancer. It wasn’t even on my radar.
BM: Your investigating. Did that consist of going on the internet to learn more or did you decide to right away go and see a doctor?
GL: It didn’t even cross my mind that it would be anything of concern. In fact, I was told at the time when I was going through those treatments for IVF that breast tissue can become dense, it can become painful, so to expect that; but I was pretty concerned after the treatments were over and it continued. So, I made an appointment with my OBGYN, and at the time they were going to test whether or not the embryo had transferred, and sure enough, I learned on the same day that through an ultrasound that I had all the characteristics of breast cancer.
BM: At this point, did you see any other health care professionals, or did you immediately start out with some sort of treatment regimen?
GL: First I was sent for a biopsy, which confirmed that I had Stage III breast cancer, and because my breast cancer was estrogen-driven and I was in fact, pregnant, there was a great concern for my life at that time, so very quickly, we had to come up with a plan and assemble a team of doctors and move forward with some sort of action at that point.
BM: Gillian, it is never a question of whether this is difficult news, because of course it is, but every person is different, every diagnosis is different. Knowing the variables that went into your diagnosis, what was your reaction when you got this life-altering news?
GL: I was in a state of shock, obviously, but I knew being a scientist by profession, I understood what the consequences and what I faced I terms of progression at that point if I didn’t do anything. I had a wonderful team of doctors assembled around me who made great recommendations, they empowered me with information so that I could move forward with what was the best decision for me. Ultimately that was to move forward with a mastectomy while I was pregnant. As such, I started chemotherapy after 20 weeks of pregnancy.
BM: And to what extent was the mastectomy more difficult because you were pregnant at that time?
GL: It posed a significant risk for me. I had a history of miscarriages, and so my team of doctors had to get very creative in terms of how to move forward in terms of the simple things you would not think much about, such as anesthization, so that we don’t pose a risk to the fetus, but also from an emotional standpoint, I went through three years which I thought was the absolute most difficult time, going through the infertility process and losing late-term pregnancies. I thought that was the hardest part of the road. I never thought I would be finally pregnant and having to go through cancer treatment. That was never on my radar.
BM: It is so important to have the best possible care team you can have. Based on what we’ve heard so far, it sounds like you felt that you were in good hands.
GL: I really did. I am very fortunate because my husband is connected with a number of physicians at Johns Hopkins in Baltimore, Maryland. This was a pretty unique situation, and I was able to have this wonderful team of doctors around me and I felt very empowered by them, providing me information, doing what was best for me. I had basically three choices. I could go forward with the pregnancy and wait until after my baby was born to then address the cancer, but because of the type of cancer I had, which was fueled by estrogen and knowing that my estrogen was going to increase over time, it didn’t look good for me, in fact, it put a huge possibility of death for me with the prospect of the cancer spreading. I could have aborted the pregnancy and that didn’t feel good to me, either. I really wanted to be a mother. It was really in my heart. Or I could go forward with the path that I took and that was to have the mastectomy and then start chemotherapy after 20 weeks once the chemicals cannot pass the placenta. That seemed like the best option at the time, and I have regretted it since.
BM: Gillian, you mentioned your husband and it sounds like he brought a certain level of expertise to the overall situation. Let me ask you about your husband’s involvement in another way that has nothing to do with medicine. What was your husband like as a source of support?
GL: He’s my best friend. That is really important when you are going through cancer of any kind, or any kind of illness that you have a supportive partner who will give you your space to go through the gamut of emotions, give you permission or support you to be who you are, because it’s really difficult to laugh with you when you need to laugh and cry with you when you need to cry, and so he absolutely provided that to me, and still does.
BM: Anybody else you could list as significant sources of support?
GL: My nurse navigator at Johns Hopkins was incredible. She had been through breast cancer ten years prior, the same type of breast cancer not during pregnancy, but that was really important to me. In general, I felt pretty isolated as a young woman. I tried reaching out to support groups and I felt very lost. There was a very large age gap and I felt there were certain challenges I was facing and needs that I needed to be filled no one around me could relate to. I couldn’t relate to the rah-rah pink survivorship mentality, I felt like there was something more for me. I felt like surviving was more about maintenance versus I really wanted to thrive, which for me means resiliency, and so I had a really difficult time in the support groups. I felt like it was a bit on the negative side. I have always been a person who was extremely positive, but also aware of owning my emotions so that I gave myself permission to be sad and angry, but at the end of the day, I wanted this to be more of a transformative experience than a defining experience, so that’s why I moved forward to create my own circle.
BM: We’ll get to that in just a bit, Gillian, but I do want to go back to a part of this experience, that it was certainly challenging in a big way, and that was your going through chemotherapy. What was the toughest part of that?
GL: I had to go through two phases of chemotherapy, one during my pregnancy and then after my son was born, about three weeks after. I chose to be focused on my pregnancy almost as sort of a distraction to keep me upbeat and not just crying in bed all day, just to focus on the life inside of me because that is such a juxtaposition, you are trying to nurture this life inside of your body at the same time as killing cells, so I had to focus on my pregnancy and so I felt like that was a bit easier. I continued to work during that phase of my life as a marine biologist and it gave me a distraction, and something else to focus on. Once my baby arrived is when it got really hard for me. I started the weekly chemo, which hit me really, really hard. The effects were synergistic, so I was experiencing a lot of pain, so layered on top of that, I am a new mother, so all of the exhaustion that comes along with that phase, everything was just compounded. I really felt like it was a difficult time for me.
BM: Was hair loss an issue?
GL: Yeah, it was for me and it a bit of a wakeup call. I was wondering if I really had this big of ego, but it was tough. I think when I lost my breasts, it was very personal in the sense that not everyone could see that besides my husband. With the hair loss, it made me look sick and everybody knew. All my life I had had a long mane of hair, and it was almost like a protective cover. So, I felt very vulnerable and exposed during that phase. It was the only thing I could control and that was to have a little group party with my friends and shaved my hair off before it all fell out. So, I could control that.
BM: Well, speaking of the area that’s under your hair, there’s your brain. Numerous interview guests we have heard from who have undergone chemotherapy, they talk about suffering from ‘chemo brain.’ Did you experience chemo brain?
GL: Yes, indeed it did, and it was something I spoke with my oncologist about regularly because I did go back to work, and as a marine biologist I would really have to apply myself from the head side of things, and memory loss was a bit of an odd experience because it was short term memory loss, something, “Gosh, I forget your name, Bruce,” like it would just happen that way. I would wonder why I am not remembering this. I recall I was in Toulouse giving a talk in front of 300 people. I was speaking on the subject matter, I looked at the crowd and just completely went blank on what I was talking about. I was ashamed, just embarrassed because that wasn’t usual for me, and it was a lot to accept. I was hard on myself, my boss was certainly very hard on me without understanding, no empathy whatsoever. It was at that time that I just realized that maybe I need to step away a little bit and focus on my health and not necessarily on my career.
BM: Gillian, before we get to any other phase of your cancer journey, there is a question I am sure many of our viewers and listeners have, and that is your childbirth. How did that turn out?
GL: It went really well, to be honest. It was painful, as it always is, but it went really well and it was a really beautiful experience. I had a really wonderful supportive team. My OBGYN was just so great. Even through pre-cancer, when I was going through the issues of infertility, she was just so supportive, then she started to work with my team at Hopkins just to make sure I had the best care possible. I did and I felt like the moment I met my baby, it was just the greatest joy of my life.
BM: To get back to your cancer journey, when did you sense that things were starting to improve?
GL: After my treatments and surgeries had ended, I really wanted to get back to feeling good about my life. I wanted to feel good about getting out of bed, like not only from a physical perspective, but from a mental health and wellness perspective; so, I assembled a group of people around me who were experts in various areas to help me get over the residual side effects of the chemo and the surgeries, you know, my body just didn’t feel right. I really worked hard at it. I set my goal. I headed to Tanzania with one of my close friends, and scaled Mt. Kilimanjaro. That was a very cathartic experience because as you ascend, oxygen becomes an issue and you don’t talk very much and you get into your own head, and I thought about a lot of things and how this journey changed my perspective on life and what’s important to me. I knew there was something more in my life for me, ahead.
BM: Give us an example of how your renewed focus changed your outlook.
GL: I felt that I wanted to be connected with more women in my community, young women. I knew when I did become connected with women in my community, I had something to offer them in terms of my shared experience that maybe could help them.
BM: You have already left a few bread crumbs as to this next question, but I want you to fill in the blanks. The iRise Above Foundation. What inspired you to establish it?
GL: Once you’re finished with all of your treatments and surgeries, you are kind of sent away by your team of doctors to say, ‘I’ll see you in six months,’ I kind of thought, what is this about? You are so used to being at the hospital every week and in the survival mode of maintenance, checking the boxes and doing the things that you need to do. I assembled a group of wellness experts around me to help me feel better in all aspects of my life and I had told my oncologist that I was going to go climb a mountain. She laughed at me a little bit and said she’d see me in six months, so six months passed by and I had worked really hard. One of the things that affected me a lot was that because of the drugs I was on, I instantly gained a lot of weight. It was hard on my body. I felt a tremendous amount of joint pain and stiffness. I just in general didn’t feel good. I was a very athletic person prior to my diagnosis, doing triathlons and playing lots of sports and enjoying life in that way. So, I showed up at my checkup and I brought my laptop, and I showed her pictures of what I had done and how good of a place I was in, and I think she saw what I had done. Then she asked if I would be okay with providing some young women in her clinic my contact information just to connect with because those women were having a really difficult time where they were at with their diagnoses. Of course, I said yes. I was connected with five women, all of whom asked me the question, how I got to survivorship and could I help them. That planted a seed in my mind about, you know, maybe there is something I can offer and help with that comes naturally for me because if I felt all of these things and all of these other women are feeling all of these things, then we can’t be the only ones. So, I went back to my job as a marine biologist, and I was a new mom, and I was also burning the candle at both ends. Then I had a metastatic recurrence, which completely changed my life, transformed everything, but not in a bad way. I decided to leave my career and I decided that this was my calling, that was what I wanted to do, this is where I wanted to spend my time, I thought it would be very fulfilling to me.
BM: Gillian, having an idea is one thing. Putting it into action is another. What did you do to turn this great idea of the iRise Above Foundation into reality?
GL: In the beginning, I started with a bit of a pilot in a wellness program. Some people who had helped me to get to a better place and I developed the iJourney program, which is a six-month health and wellness program for young women after breast cancer. Some of our programs are for women during breast cancer, but this particular one, it was sort of our flagship program. The reason why is for after breast cancer treatments and surgeries can sometimes involve international travel. It began with a yoga retreat and then we do an expedition somewhere, so would be like climbing Mt. Kilimanjaro or to Everest base camp. In the beginning what we did were two-week treks in Patagonia in Chile and Argentina. We really wanted women to be in a place where they felt well enough to go and do these things. In between, our wellness experts worked in two or three areas in which they really needed help, so that they would be in a physical and mental state to be able to achieve those goals at the end of that program.
BM: That’s a lot of significant face-to-face interaction, but does iRise Above, in this internet-driven age, offer services virtually to those around the nation, around the world?
GL: Absolutely. You know, I am a big believer in silver linings in things. I try to see the positive, the opportunities, and with the pandemic, we had to stop offering in-person programming. I wasn’t sure what this pandemic was going to amount to, so we just sat back and watched what was happening around the world. After thinking about it for quite a while, we decided to develop a virtual, 12-week wellness program so that women could register and be part of it and offer programming from their computer screen at any time and it was flexible for a lot of women who are professionals, who are moms and it is always a bit of a challenge to get to the gym at 6:00 in the morning or just be constrained by a particular schedule, so that has been such a success. It hasn’t gone away, it just keeps growing and it’s just a really beautiful thing. We offer more than the programs themselves, we have a wellness webinar series, so on a monthly basis, we offer free webinars on topics that are germane to our community of young women. We also offer retreats and adventure trips with the opportunity to fundraise for their respective experiences so that it’s little to no cost to them at all.
BM: If you think back to Day One of the foundation, then look at what you are doing now, obviously you are doing more now than then; however, I can only guess that the future holds many additional things, additional services for your members. What are some of the services that figure into your vision of the future?
GL: I would love to expand our virtual 12-week program to solicit more wellness experts to join us. So, if you are such an expert and you are watching or listening, we would love for you to reach out to us. I would love to bring back the iJourney program as well. That was a real success with women who were in that, and another thing I feel really strongly about is that I would like to develop a program for caregivers. I feel like caregivers are often the person left out of the overall equation, and I just think about my own caregiver, my husband. He needs his cup filled, too, and he needs to connect with other caregivers in ways that really benefit them. Those are things I see in the future we can add on, for sure.
BM: Gillian, we are going to bring this to a conclusion, and whereas we always start from the same place, we like to end in the same fashion in the same manner. I suspect an answer to this question is right in your wheelhouse, but if you encountered someone who had just been diagnosed with breast cancer, and you had a chance for a private audience with this individual, I am guessing you would have for that person a multi-faceted message; but out of all the things you might want to say, if there is part that stands out above all others, what would it be?
GL: That’s an excellent question, and I encounter it all the time. I think it is to be gentle on yourself, women reaching out. I think it is to be gentle on yourself, to give yourself permission to experience what you are experiencing, because the emotions of whatever you feel are temporary, and to encircle yourself with people that really understand you. If there is anyone out there listening who is newly diagnosed and a young woman, I encourage her to reach out to us. We have a wonderful support group where we laugh, and we cry. We have become very good friends, and in an instant, we can really make a difference when decisions need to be made, and ideas need to be bounced off friends, a tribe of women who really understand the types of needs and challenges before you.
BM: Excellent. Gillian, thanks so much for what you have shared in terms of your cancer journey and what you are doing past, present and future through the iRise Above Foundation. Thanks again for being on Cancer Interviews.
GL: And thanks for giving me this opportunity.
BM: With that, we bring to a close this episode of Cancer Interviews. We want to remind you that if you or a loved one are on a cancer journey, that you are not alone. There are individuals like Gillian and organizations like iRise that are ready and waiting to help. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
iRise Above Foundation: www.iRiseAboveFoundation.org
SHOW NOTES
TITLE: Gillian Lichota, Breast Cancer Survivor – Washington, DC, USA
Gillian Lichota saw her life flash before her eyes when she was diagnosed with Stage III breast cancer…while she was carrying a child. Not only did she survive cancer and give birth to a healthy son, but Gillian founded the iRise Above Foundation, a DC-based breast cancer support group.
Additional Resources:
The iRise Above Foundation: www.iriseabovefoundation.org
03:26 Gillian explains how she learned she had breast cancer.
04:59 Her reaction to the diagnosis.
05:42 She opted for a mastectomy, a high-risk procedure because at the time she was carrying a child.
08:50 Describes her treatment options.
12:17 Gillian on the challenges going through chemotherapy while pregnant.
13:15 She concentrated on her pregnancy to take her mind off chemo.
13:58 Hair loss
15:16 On how she was affected by ‘chemo brain’.
17:04 Describes her successful childbirth.
23:35 Gillian says she experienced a metastatic recurrence.
30:55 Her message to anyone just diagnosed with breast cancer.
KEYWORDS (tags):
breast cancer
cancer
invitro fertilization
mastectomy
bruce morton
chemotherapy
gillian lichota
cancer interviews
metastatic recurrence
anesthization
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