Michelle
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Michelle is a two-time survivor of Stage 1 breast cancer. Her first episode, about five years ago, began with a tiny tumor discovered through a routine mammogram. Upon learning she had breast cancer, Michelle says “I felt the blood drain out of my body.” As she watched her grandmother die of breast cancer years ago, she thought, “oh, my gosh. They're just boobs. If it ever happens to me, they're gone.” But it wasn’t so simple when Michelle faced her own treatment decision. She needed to be a good mom and hold and cradle her 20 month-old son. Given her own diagnosis, Stage 1 ER/PR-positive, HER2-negative breast cancer, she decided against a mastectomy and opted for a lumpectomy with seven weeks of radiation. Daily treatments were exhausting, but doable. Michelle recalls that upon completing radiation, “I got to ring the bell, and that was fabulous.” Luckily, she did not need chemo, and started tamoxifen, a form of hormone therapy. “Life,” she says, “kind of went back to normal… I gained a little bit of weight, but with the hormone therapy, that's part of it.”
Then about a year ago, Michelle’s annual mammogram revealed a new occurrence if breast cancer in her other breast. It was also Stage 1, ER/PR-positive, HER2-negative, but growing a little faster than the first. This time Michelle says, “there was no debate.” She opted for a bilateral mastectomy, noting, “ccrew me once, your bad. Screw me twice, they're gone.” She didn't need breasts anymore, with her son older and more independent. While still wanting “to cuddle with him and be a good mom,” she concluded, “being an alive mom is better.” She had a lot of intense pain after the mastectomy, and to this day, she notes, “I struggle with washing my hair.” Breast reconstruction with a latissimus back flap was also tough. But she feels more normal, “with shirts on, they look great,” she says, but “without a shirt, I don't love them.” She opted for a full hysterectomy to suppress her estrogen versus having monthly shots. She was “tired of needles,” noting, “I've been a pincushion off and on for five years now.” She was done having children, and didn’t “need any of those parts anymore.” The laparoscopic surgery was “a piece of cake” and she was home the same day.
Michelle currently takes letrozole, the least bothersome of the three forms of hormone therapy that she has tried. Nonetheless, she still has “incredibly bad joint pain, muscle pain, hot flashes, insomnia, and weight gain,” noting, “I am the textbook side effect for all of them.” While the negative effects of treatment and getting rid of “essentially all my lady parts” have been tough, life itself is so much more important to Michelle, who says, “I want to live to see my son grow up, and to spend time with my family, and enjoy my life with my husband and my step-kids.”
Michelle also notes the positive sides of having breast cancer. She has a wonderful support system with her husband, friends, and family. She has found a new passion that enlists her intellect, love of writing and helping others. As an advocate at a local non-profit organization, she supports people with breast cancer. She has also created a blog to share her story called, “I never liked pink: Until it became my favorite color,” and hopes to write a book and become a public speaker. She notes that cancer, “definitely doesn't define me. But it has helped me create a new path for my life.” She emphasizes that while her husband, family, and friends are amazing, they don’t and really can’t get the full breast cancer experience. Michelle finds going to her young survivors' group of with the women “who've gone through what I've gone through, there's just a sense of kinship and a sense of connection.”
Michelle says as her circumstances changed, so did her decisions.
Michelle says as her circumstances changed, so did her decisions.
I had no idea what I was going to do. Met with the oncologist the following Tuesday, and they gave me my options. I was ER/PR-positive, HER2-negative, stage 1. I had a very small tumor, four millimeters--essentially, smaller than a pea. So, it was caught very early. I was very fortunate. So, they weighed out all my options. And I could have a lumpectomy with radiation, or I could have a single mastectomy. I could have a bilateral mastectomy.
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At the time, my son was 20 months old. And when I really thought about it--I had, I had talked to multiple people over the course of that weekend--and some people who had had lumpectomies, people who had had mastectomies. And I came to the decision that for me, at that time in my life, I could not have a mastectomy because of the physicality of it because my son was so young. I still wanted to be able to hold my son, cradle my son, be active with my son. And they had told me the survival rates for the lumpectomy with radiation versus the mastectomy were the same. The recurrence rates were not the same because I would still have breast, breast tissue left. But for me, that was enough, that if I was going to survive, same percentage-wise. So, I went ahead, and I had a lumpectomy.
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So, 2017, I went back in for my mammogram. And I found out that I had a new occurrence in my other breast. So, separate from the first one, same chemistry--ER/PR-positive, HER2-negative, very small, still stage 1. But it was growing a little faster. So, at that point, there was no debate, no discussion. I chose to have a bilateral mastectomy. Screw me once, your bad. Screw me twice, they're gone. I didn't need them. My son is old enough that he is more independent. He's on his own. Yes, I still want to cuddle with him and be able to be a good mom. But being an alive mom is better. So, I chose a bilateral mastectomy.
Michelle chose lumpectomy at the time of her first surgery because her son was still a baby, and says it was the right thing for her.
Michelle chose lumpectomy at the time of her first surgery because her son was still a baby, and says it was the right thing for her.
So they weighed out all my options. And I could have a lumpectomy with radiation, or I could have a single mastectomy. I could have a bilateral mastectomy. They weren't sure about chemo yet because they wouldn't find out until afterwards, but they didn't think I was going to have to, which was great news. And we went home. And my husband I talked about it for hours. We cried, and we cried. For a while, I did the typical "Why me?" You know, “Why do I have this? How am I so unlucky to have this?” But it's not a luck factor. It just is what it is, I finally realized later. At the time, my son was 20 months old. And when I really thought about it--I had, I had talked to multiple people over the course of that weekend--and some people who had had lumpectomies, people who had had mastectomies. And I came to the decision that for me, at that time in my life, I could not have a mastectomy because of the physicality of it because my son was so young. I still wanted to be able to hold my son, cradle my son, be active with my son. And they had told me the survival rates for the lumpectomy with radiation versus the mastectomy were the same. The recurrence rates were not the same because I would still have breast, breast tissue left. But for me, that was enough, that if I was going to survive, same percentage-wise. So, I went ahead, and I had a lumpectomy.
Michelle says her nurse navigator was very supportive.
Michelle says her nurse navigator was very supportive.
And I also was given a nurse navigator, who is amazing. If practices don't have this, they should. She's a trained nurse, but she is also someone who you can call with questions, help you through the process. And I was lucky enough that my nurse is also a survivor.... But just having that person that I could call at any time, who can email, call, answer all my questions, having something like that was outstanding.
Michelle used smart timing to reduce her out of pocket costs.
Michelle used smart timing to reduce her out of pocket costs.
I had gotten smart and moved my mammograms from December to January because that first go-round, I had to pay my out-of-pocket maximum in two different years. So, in December, I had to pay it for 2012. And for 2013, I had to pay it because of all the different procedures. So, I got smart and moved my mastectomy, or excuse me, my mammograms to January. Several people described ways in which their insurance companies had difficulty dealing with anything out of the ordinary. John, for example, found that his insurer initially rejected his breast cancer expenses: “they see a man's name and a breast cancer diagnosis, well, that can't be. We're not paying that. What's wrong here. Without investigating, they just dismissed it.”
After some time, Michelle chose 3D tattooing to replace her nipples.
After some time, Michelle chose 3D tattooing to replace her nipples.
One thing that I forgot to talk about, which is so important to me, I was tattooed. So, after my mastectomy, I did not have any nipples left because, just, they could not save them for me. For some people, they can. But for me, they didn't.
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And I knew from the beginning that I wanted to have nipples back. I had considered getting them reconstructed, but I did not want a hard nipple all the time. And, so, in my young survivors' group that I go to, everyone shows off their boobs because the new people want to see the scars and see what's going to happen. And I had seen a woman who had her nipples tattooed, and it's amazing! They're—3D nipple tattooing is unreal.
Michelle reflects on the challenges of having sex and solutions she had found.
Michelle reflects on the challenges of having sex and solutions she had found.
When you're going through the whole cancer process and the surgeries, and they're doing everything—you're taking away your breasts and expanding them, and then reconstruction and a hysterectomy—sex is the farthest thing from your mind. But then you get to the point where you're like, "Okay, I want to be intimate again." And your body's like, "Mhmm, no." And we're working to get that back and it's challenging. But I have found, my tattoo artist also has another company where she has made natural lubes and they're made of hemp oil and grape seed oil. And she also has a caplet which you insert every night, which also helps keep your vagina lubricated. That has helped. Also, I've found local estrogen suppository, which does help. You take that once a week, and you just—I joke with my husband. I'm like, "Well, practice makes perfect." And it's not always easy. And it still can be painful, but you make progress because we, you know, want to get back to a good place. I went out and purchased dilators, which I use because I want to feel better. But doing all that, it seems so—it's work.
Michelle says good communication helped avoid misunderstandings.
Michelle says good communication helped avoid misunderstandings.
And sexuality after cancer is hard enough. But then when you're trying to be intimate again, and you're tired, and your parts are different—my husband used to love to touch my breasts. And for the longest time, he didn't want to again because he was afraid that he was going to hurt me. And I had to sit down and tell him, “Look, you're not hurting me, but I also don't want you to ignore them. I know you feel differently because, you know, I don't have much feeling in my breasts anymore. But I don't want you to avoid a certain part of my body, because that felt even more obvious than just, kind of lightly touching them, or whatever.” It was different, and so we had to have discussions on that.
Michelle found a part-time job but discovered she needed more time to recover.
Michelle found a part-time job but discovered she needed more time to recover.
I've been a stay-at-home mom for seven years. I kind of wanted to go out and find my new identity again, but with being able to enjoy being a stay-at-home mom. And so, I thought-- my son was in first grade at the time. I'm like, “Hey, I'll get a job at the school. I can do something at the school.” So, I got a job in the lunchroom. I was the helping kids open their lunch, and sending them to the bathroom, and keeping them on track. And they're elementary school kids. They're busy, and loud, and hungry, you know, and they have a lot of energy. So, I thought I could do that. But I was having a lot of pain. And I made it for three days-- excuse me-- two hours a day. And every day when I came home, I was in pain. I was swollen, and I was exhausted. Thankfully, I, I know the principal well. And on the third day, I went in and talked to her. And I said, “I can't do this anymore.” And I was in tears. I, I was really struggling with the pain that I had gone through and everything I had gone through last year. And I wanted to find something to do, but that wasn't it, because I just couldn't do it.
Michelle found passion for a career in advocacy through her breast cancer.
Michelle found passion for a career in advocacy through her breast cancer.
Oh, the one thing that I did not say-- that when I was talking about figuring out that I wanted to become an advocate for breast cancer and for women, is that last year when I when was at the survivor luncheon, I said that my goal, going forward, was in three years to be the speaker, the keynote speaker for the luncheon, and to be promoting a book. Well, I haven't written my book yet, but this year, one year later, I am the keynote speaker for the [event], which is in October.
The theme for the event is Twinkle Twinkle, You're the Star. And they're honoring all the survivors locally. But my speech is how I found my twinkle. And while that might not necessarily be my phrase, it's true. I have found something in my life because of the cancer that I've become very passionate about. And it is going to be my career for the rest of my life. And so I am honored to be talking about that. So I was lucky enough to figure out a new goal and a new hope from the cancer. And if I can share that with other women and to show that, hey, like my story is not so special, but the things that I found inside myself and from the support that I have, you can do amazing things.
Michelle put her faith in herself and her doctors.
Michelle put her faith in herself and her doctors.
For me, it was more faith in-, faith in myself, faith in my doctors, and the support that I have, and faith in keeping a positive attitude because attitude is huge.
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I now have faith that I can get through some really awful things. And I have lived through possibly the worst that my life is going to give me. And so that, that kind of is my faith.
Michelle finds kinship and a sense of connection with other women in her group.
Michelle finds kinship and a sense of connection with other women in her group.
While my husband, my family, my friends are amazing, they don't get it.
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I go to a young survivors' group that meets once a month. And when I go talk to those women, and they are able to share, whether it's talking about how sex really is hard after cancer; how relationships and intimacy can be very hard; how it's challenging to be a parent sometimes because you're fatigued, and you're tired, and how do you take care of yourself while still being a good parent after cancer. So many things come up. But talking with the women, in particular, who've gone through what I've gone through, there's just a sense of kinship and a sense of connection.
Michelle found passion for a career in advocacy through her breast cancer.
Michelle found passion for a career in advocacy through her breast cancer.
Oh, the one thing that I did not say-- that when I was talking about figuring out that I wanted to become an advocate for breast cancer and for women, is that last year when I when was at the survivor luncheon, I said that my goal, going forward, was in three years to be the speaker, the keynote speaker for the luncheon, and to be promoting a book. Well, I haven't written my book yet, but this year, one year later, I am the keynote speaker for the [event], which is in October.
The theme for the event is Twinkle Twinkle, You're the Star. And they're honoring all the survivors locally. But my speech is how I found my twinkle. And while that might not necessarily be my phrase, it's true. I have found something in my life because of the cancer that I've become very passionate about. And it is going to be my career for the rest of my life. And so I am honored to be talking about that. So I was lucky enough to figure out a new goal and a new hope from the cancer. And if I can share that with other women and to show that, hey, like my story is not so special, but the things that I found inside myself and from the support that I have, you can do amazing things.
Michelle reminds us that people still need support after treatment ends.
Michelle reminds us that people still need support after treatment ends.
Remember that even when your loved one has finished their treatment, they're still not over it. Like I might look fine. Like you would never know everything that I went through last year. But emotionally, it's still there. And physically, it's still there. Just know that once their treatment is over, they're not, they’re not done. And continue to ask about it. Ask them if they want to talk about it, because not everyone brings it up like me. I want to talk about it all the time. Because for me, it directed me to a different part of my life that I really am passionate about. But most people don't. But just knowing that you still care about it is huge, and you care enough to ask.