Ginny
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Ginny was diagnosed four years ago with Stage I breast cancer following a routine mammogram. Not long after, Ginny underwent genetic testing which came back positive for a mutation on her PALB2 gene. Read more about Ginny’s experiences with inherited cancer risk and genetic testing here. Ginny credits her team at a comprehensive academic cancer center, who sped up the biopsy, the consultations, and the treatment planning, so she could leave on time for a planned vacation. She had a lumpectomy soon after returning from vacation. Based on her tumor’s Oncotype, Ginny had elective chemotherapy, followed by radiation. She takes a hormone therapy to suppress estrogen which helps to reduce her risk of cancer recurrence. One of her sisters was dealing with breast cancer that had metastasized ten years after treatment for an early-stage cancer. So, that along with her genetic mutation, Ginny decided she “was not going to monkey around,” and opted to do everything she could to lower her risk of recurrence, despite side effects.
Chemotherapy and hormone therapy both came with some surprising setbacks. Chemotherapy brought on fatigue and nausea, which she managed with anti-nausea medications and taking time to pamper herself. Hair loss was another matter. Her once thick, beautiful hair grew back slowly and sparsely. Ginny is surprised that being without—and now having thinner hair—had such a big impact on her self-esteem. Hormone therapy comes with severe joint pain that makes this once active middle-aged woman feel like she’s “80 years old.” Ginny was in such bad shape that she was about to schedule hip replacement surgery until her radiologist pointed out, well into her five-year treatment, that joint pain is a common side effect. Switching to another type of hormone therapy has helped somewhat. Ginny wishes she had fully understood that the Taxotere component of her chemotherapy cocktail was associated with “permanent alopecia” (hair loss) and that hormone therapies can cause debilitating joint and muscle pain.
Ginny is “a big believer in having a health advocate,” because “you get so overwhelmed with information… that it's very hard to keep it all straight.” She is so grateful that her partner was so “clear eyed and clear eared,” so she could help Ginny weigh all the treatment options. She also accompanied Ginny to the surgery, and all the chemotherapy treatments. Ginny’s sister, who was tackling metastatic breast cancer at the time, was a strong source of support and inspiration. She participated in every metastatic breast cancer research study that came around. Ginny “took that to heart” and has decided that she too will participate in research when given the opportunity.
Ginny works remotely at home and was been able to keep up with her intellectually demanding job during chemotherapy, while taking needed time to rest and pamper herself. Working, she says, was actually helpful, because it “takes your mind off things.” Ginny’s sister has since died and now Ginny thinks about her own life in a more balanced way. She is contemplating an earlier retirement, because wants to spend more time enjoying nature and exploring other aspects of life.
Ginny worries about the potential for permanent hair loss.
Ginny worries about the potential for permanent hair loss.
I lost all my hair on week two or week three of the first chemo.
I think being without hair is surprisingly impacting of your self-esteem. I'm not a shirker or a, I can't think of the right term. But a shy person. So I went out and did whatever I was going to do, wearing all my little knit caps and things like that. But it does make you self-conscious.
That's a, that’s a real hardship. And to find out that that was a known side effect that could be permanent, that's big to me. It would almost make you rethink the chemo. Not me. I think I would have done it anyway. But I used to have very thick, coarse hair. I don't anymore. And I've lost everything I had right here. And so it impacts how I look, how I feel about myself, how I wear my hair, how I can wear my hair.
After steroids kept her from sleeping, Ginny changed when she took them.
After steroids kept her from sleeping, Ginny changed when she took them.
There were just things I learned to do with the medications to reduce the impact. And I would look it up. For example, the first chemo, you take a steroid. The day before, the day of, and the day after. And that kept me up all night. And so, I started so that, next time around, I took it at 4:00 AM each of those days. So, I didn’t have the, and I think I took a half a sleeping pill or something at night. So, I didn’t, and I had to, I had to Google that to figure out that it was that steroid that keeps you up. And I've talked to other people who had the exact same experience.
Ginny pampered herself.
Ginny pampered herself.
Part of the regimen is, whatever makes you feel good, give yourself license to do it. For me, like I said, the first round of chemo, I felt kind of like I'd been beaten up with a bat. I just ached.
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And so for me, getting a massage. And I think I got chiropractic in there, too. And so for me, getting a massage. And I think I got chiropractic in there, too. I just had this regular sort of, taking a bath every day. Feeling like I could close work if I felt done in. I didn't take a lot of work off but I gave myself license to lay low if I needed to. And just doing things that made me feel good and didn't tax me. That was my way of pampering myself.
So the advice would be to pamper yourself.
Yeah. Exactly. I mean, you're going through a lot, mentally and physically. And whatever you can do that, that makes life more enjoyable. Yeah. Yoga, massage, anything that’s, a hot tub, anything that's a pamper for you I would recommend, because you deserve it. I mean, you're handling a lot. After the first treatment, I felt like I'd been kind of hit with a plank. I just ached everywhere. I started taking a bath every night. I did, throughout the four treatments, I then did a massage right after each treatment. I just pampered myself.
Ginny wishes she been better informed about side effects before they got so debilitating.
Ginny wishes she been better informed about side effects before they got so debilitating.
A pretty big concern for me, and nobody had said anything about it, is that I had horrible joint pain the year following treatment. And it wasn't for an entire year that my radiologist, oddly enough, was asking me questions. And I had already been seeing an onco-, ah sorry, an orthopedics guy about my hips, thinking I needed a hip replacement. And he said “Yes.” And I said, “Ah, wait.” But it wasn't for another couple months that the radiologist was just, it was my final one-year follow-up with her. And she off-handedly said, “How's your joint pain?” And I said, “Awful.” And she said, “Well, that's a side effect of the anti-estrogen drugs.” Which I had no idea.
Ginny says pampering herself and giving herself permission to lay low was very helpful while going though chemotherapy.
Ginny says pampering herself and giving herself permission to lay low was very helpful while going though chemotherapy.
I just had this regular sort of, taking a bath every day. Feeling like I could close work if I felt done in. I didn't take a lot of work off but I gave myself license to lay low if I needed to. And just doing things that made me feel good and didn't tax me. That was my way of pampering myself.
So the advice would be to pamper yourself.
Yeah. Exactly. I mean, you're going through a lot, mentally and physically. And whatever you can do that, that makes life more enjoyable. Yeah. Yoga, massage, anything that’s, a hot tub, anything that's a pamper for you I would recommend, because you deserve it. I mean, you're handling a lot.
Ginny worries about the potential for permanent hair loss.
Ginny worries about the potential for permanent hair loss.
I lost all my hair on week two or week three of the first chemo.
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I think being without hair is surprisingly impacting of your self-esteem. I'm not a shirker or a, I can't think of the right term. But a shy person. So I went out and did whatever I was going to do, wearing all my little knit caps and things like that. But it does make you self-conscious.
---
That's a, that’s a real hardship. And to find out that that was a known side effect that could be permanent, that's big to me. It would almost make you rethink the chemo. Not me. I think I would have done it anyway. But I used to have very thick, coarse hair. I don't anymore. And I've lost everything I had right here. And so it impacts how I look, how I feel about myself, how I wear my hair, how I can wear my hair.
Ginny wrote up and shares her “recipe” for getting through chemotherapy.
Ginny wrote up and shares her “recipe” for getting through chemotherapy.
Some people use like support groups. You know, either to swap information or tips or emotional support. Either online or in person. Did you ever?
I didn't, so much. Certainly, I think I got information from [LOCATION] about a breast cancer support group. I don't think I felt the need for it. I drew up something I call my recipe for a low-impact chemo. Because I had, other people came up and told me they had been diagnosed. And so, that was the regimen. And I wrote it down and sent it to my oncologist. Those were the things that worked for me. And I said, these things might help other people. And I did want to share that. So, when I've been told or heard from a family member or friend that somebody else has been diagnosed, I've asked them if they wanted me to share this page thing that I wrote up. And they had to do with, what the drugs might cause and how I dealt with that. And, you know, what I did to alleviate some of the symptoms. So I was happy to share that.
Ginny describes the things she did to pamper herself.
Ginny describes the things she did to pamper herself.
Whatever makes you feel good, give yourself license to do it. For me like I said, the first round of chemo, I felt kind of like I'd been beaten up with a bat.
---
And so for me, getting a massage. And I think I got chiropractic in there, too. I just had this regular sort of, taking a bath every day. Feeling like I could close work if I felt done in. I didn't take a lot of work off but I gave myself license to lay low if I needed to. And just doing things that made me feel good and didn't tax me. That was my way of pampering myself.
So the advice would be to pamper yourself.
Yeah. Exactly. I mean, you're going through a lot, mentally and physically. And whatever you can do that, that makes life more enjoyable. Yeah. Yoga, massage, anything that’s, a hot tub, anything that's a pamper for you I would recommend, because you deserve it. I mean, you're handling a lot.