Chemo during the coronavirus outbreak: Marisa
Getting chemotherapy is always scary, and the outbreak of COVID-19, the disease caused by the new coronavirus, adds new concerns and uncertainties about the experience. We’re here to help you make sense of the new realities.
Living Beyond Breast Cancer CEO Jean Sachs spoke to Marisa, a young woman who started chemotherapy in March, about what it is like to get breast cancer treatment in this time. They speak what it’s like going in for treatment and the challenges how social distancing has affected her support system. Watch, listen, or read the transcript below.
We’re here to support you through the COVID-19 outbreak and beyond. Join us on Facebook by joining our private groups – Breast Cancer Support: All Ages, All Stages and Breast Cancer Support for Young Women – to share knowledge and support with others affected by breast cancer.
Marisa was diagnosed with early-stage breast cancer in 2019. After a lumpectomy in November followed by a bilateral mastectomy in February 2020, she began chemotherapy for stage I, hormone receptor-positive breast cancer in March, at 37 years old.
Jean A. Sachs, MSS, MLSP
Chief Executive Officer, Living Beyond Breast Cancer
Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.
Jean Sachs (00:00):
Hi everyone, it's Jean Sachs. I'm the CEO of Living Beyond Breast Cancer. First and foremost, I hope you're all safe and doing well and staying as calm as possible. Today I am talking to Marisa from New Jersey. Hi Marisa.
Hi! Thank you for having me.
Jean Sachs (00:18):
Marisa is a young woman, 36 years old, who is in the middle of treatment for ER-positive breast cancer. She also has three children, twins that are 7 and a 1-year-old. And she was gracious enough to carve out a little bit of time to talk to us about what it's like to be in treatment in the time of COVID-19.
Marisa, please start by telling us about when you started treatment.
I was diagnosed in August. I had a lumpectomy in November and a bilateral mastectomy in January. My doctors did not think I was going to need chemotherapy because I caught everything really fast and quickly. But my Oncotype score came back as a 25, so they encouraged me to do chemotherapy, because of my age, as a preventative measure.
I was scheduled to start March 3, but I was on the Living Beyond Breast Cancer Facebook page and I connected with a woman who is in my exact same situation and she really encouraged me to get more opinions. I did and I'm so thankful that I did because I ended up reducing two treatments based off the recommendations of these other three other doctors I met with. At that point I was scheduled to start March 16, and March 16 was when everyone started shutting down.
All of the States were shutting down the schools, everything was closing and I, in the meantime, was also going to be cold capping. We needed to make sure I was getting my cold capping equipment in time, but also didn't want to pay for it if I wasn't going to be using it yet. It was just extremely stressful.
I talked to my oncologist and we decided that I would wait 14 days. We would quarantine for 14 days to make sure no one in my family had the corona virus and then I would begin treatment.
I started on March 30 and I just had my second treatment this past Monday, which was April 20. And I have two more left to go.
Jean Sachs (02:16):
Okay. Just hold on for a minute. Tell me first, what drugs are you taking?
Taxotere [docetaxel]) and Cytoxan [cyclophosphamide].
Jean Sachs (02:24):
And you have a total of four treatments spaced every three weeks?
Jean Sachs (02:34):
Tell us a little bit about what you did to protect yourself from getting the virus, knowing you would be immune compromised.
It's extremely stressful because in normal life, this is a terrible time to be in this world. Then having to go through chemotherapy on top of it just makes it so much worse.
I was trying to not read a lot on Facebook, or read the news and staying informed but not being too crazy. We were having groceries delivered to our porch. We wiped them down. We would not leave. I have certain family members that go to the store for us. I was doing delivery, shop deliveries, things like that. My close circle — my mother and my mother in law — are here to take care of my kids and we'd go to treatment. So I, they are also completely quarantining as well. We get them deliveries and try and make sure that none of us are going anywhere.
I asked my oncologist, should I wait until this is over [to get chemotherapy]? And that is not the recommendation. They want you to do it closer to surgery. This can last really over a month and they don't know what's going to happen. The recommendation is still to continue to power through. With that, I said to myself, how can I get this if I don't go anywhere except the treatment center with the mask on, with gloves on. And I just have to trust God. And just know that it's going to be okay.
Jean Sachs (04:11):
Yes, I think you're doing all the right things. When you go for treatment, are you able to bring someone with you or are you by yourself?
Thankfully, because I'm cold capping, they are allowing my husband to come with me because he has to cold cap me. But that would not be the case if I wasn't cold capping. It's a very strict protocol: his name has to be on the list, they take everyone's temperatures, everybody gets screened with questions at every stop that you make checking in, then with this doctor, then with that. You get all the questions four or five times. Everyone's wearing masks. There's cleaning people constantly coming around, cleaning the doors, cleaning doorknobs, walls, and stuff like that.
Jean Sachs (04:53):
I think it's amazing that your doctors have allowed you to continue doing cold caps. I assume you're using the gel caps, right? Or are you using a scalp cooling?
The scalp cooling, yeah.
Jean Sachs (05:06):
That's great. How much extra time does that add to your treatment?
It's a long day. It's a lot. You have to start capping an hour before treatment begins. So while they're doing your pre-medications, that's when we start. Then you have to cap for 4 hours after. When we leave we actually just do it in the car. We drive around for four hours, because my children don't know anything that's going on in my life and I'm really trying hard to keep it that way. just cause they're so little and I just don't feel like they need to know at this point. So we drive around for 4 hours in cap and I'm exhausted. I'm falling asleep and it hurts, but I'm trying really hard to save what I can.
Jean Sachs (05:50):
That is a lot. I can just imagine you guys driving around with the cap on.
It’s hard because you can’t go and eat. We can't really go anywhere either because everyone's quarantined.
Jean Sachs (06:01):
I know. Are you having success with the cold cap? I see your beautiful hair.
I would say yes and no. I had a lot more hair. It's difficult, but I had a lot of thick, curly hair, so it's different than the normal person who has straight hair. It's been a lot of work on my end. I have to make sure I don't have any knots. It's time consuming and tedious, but I'm not giving up, so I'm just going to continue to power through it. Hopefully I can save as much as I can.
Jean Sachs (06:37):
It looks to me like you're doing well and with two treatments left, I think you should feel pretty good that you might have thinning but not lose it. I think that's optimistic and I hope for people listening that, if not losing your hair is something that's very important to you, to persist.
Was your oncologist open to that or did you have to push for it?
They were totally, they had no pushback on that at all.
Jean Sachs (07:06):
That's great. So I just want to cover a few more issues. How are you keeping in touch with your doctor during this time?
After my first appointment we just had a phone call to follow up on my side effects and that was pretty much it. If I had any issues I could just call them, that was it. This time around he said we don't need to have another appointment, unless I have to call him for any reason. But that's it. I just go there on my treatment day and I'm done.
Jean Sachs (07:34):
How have the nurses been in the hospital?
They've been great. I'm actually not going to a hospital. It's like an infusion center, doctor's office. That also makes me feel a lot better because not a lot of people are in this building.
Everyone has really been so wonderful and accommodating for the cold capping as well, I know there's other places that aren't allowing that and that is just hard.
Jean Sachs (08:01):
We talked about the fact that you have three children that are young, give us a sense of how you're managing in the house with them. It sounds like you're not sharing the details of your breast cancer.
I feel happy about it because my kids give me all of the strengths and that I need to overcome everything. I really like when they're here and they're around me and we're doing whatever we're doing. I'm present with them, I'm not focused on anything breast cancer related, honestly. Honestly, I can live, I can be with them, I can.
Not sharing with them is part of that. I made it an outlet for me, I guess that I can just be myself and not have breast cancer over my head, 24/7.
That's part of it, but the other part is I don't want them to worry because they're so little and so innocent and they don't understand. And I'm going to be okay, thank God. I just feel there's no reason. That's another reason why I'm cold capping because I really want to make sure that I keep all the normalcy I can for them.
Jean Sachs (09:14):
Kids can be a great distraction and this is an uncertain time anyway. I can understand why you're trying to keep things as normal as possible. I know that you made the decision to have your in-laws also self-quarantine and be really careful so you have help with the children. Is that right?
For my first round [of chemotherapy], I just had my mother come and see what the kids want. My husband and I went to treatment and she quarantined. She was not going anywhere and that first week was really hard for me. I was down a lot. I was in bed for a couple of days and it was hard and a lot of it was anxiety. I didn't know what I was going to feel. I didn't know any of what the side effects would be, and it was very emotional. It was depressing. It was really hard and it's the worst time to go through this.
My husband was amazing and he was homeschooling our children, and he's a teacher. He was teaching his students and taking care of our 1-year-old who’s running around, and making dinner and it was a lot.
This time around I said, I think it will be better if someone could come in just one night and help him make dinner or something because the next couple of days is when I didn't feel well. I'm anticipating the next 3 days I'm going to be down for a little while.
In normal circumstances, I would have so much help, as I had with my bilateral mastectomy. I had meals every night delivered from family and friends. In this circumstance I know that that's what I would have had, but it's a different world we're living in. If I can get one or two people like my mom and his mom to come over and help, it will be huge.
Jean Sachs (10:57):
I think it's really important that you shared that because we know there are so many women facing that now who normally would have a huge circle of friends and those friends just can't help in the same way. I just want to end by asking you one other question: What are you doing to take care of yourself? This is so stressful and for everybody and it's extra stressful for you. What tips do you have?
The things that have been most supportive for me at this moment is all of the connections that I've found on Facebook, whether it be the Living Beyond Breast Cancer Facebook page for young women that has been incredible or the, there's like a, there's a cold capping support group that has also been incredible and connected with women that are like me and helped give me tips. I would say that that has been a huge support in helping me with just getting through it.
The other thing I would say is, just after my week of not feeling well, then I feel great for 2 weeks and I'm just back with my kids and I'm being myself and I'm cleaning the house and I'm doing laundry, I'm making dinner, I get back to trying to balance. I guess you have to feel terrible, you have to go through it, and then get back to feeling okay.
Jean Sachs (12:24):
Marisa, thank you so much. We are all thinking about you and we will be thinking about you in the coming weeks and I hope you continue to do well and get to that end where you can say the treatment's behind me and I can now focus on other things. I think your experience will be so helpful to other people.
As Marisa and I said, Living Beyond Breast Cancer has closed Facebook pages. We have one for young women and we have another one for all stages and all ages. If anyone is interested in joining, just go to our website, LBBC.ORG, and we'd be happy to include you.
Also, continue to monitor our website. We are always updating our content.
Thank you Marisa. Take care and we'll stay in touch.
Okay. Thank you.