Barbara and Tim Bigelow discuss Barbara’s metastatic breast cancer diagnosis and the side effects she experienced as one of the first people treated with immunotherapy for breast cancer. A board member of METAvivor, Barbara also explains the Beneath the Breast project, the latest initiative of the #ThisIsMBC campaign.
Running time: 16:36
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Barbara Bigelow: I’m Barbara Bigelow, and I’m from Boston, obviously, by my accent, and I’m here with my husband, Tim.
Tim Bigelow: Hi.
Barbara Bigelow: And we’ve been married for 36 fun-filled years, and we have two daughters who are 28 and 30 years old who we adore. I was an early-stage breast cancer patient. I was diagnosed when I was 44, which is on the young side, and I went through all the treatment of an early-stage person. A year of chemo, radiation, surgeries, and so forth, and during that time my sister died of metastatic breast cancer. We were three sisters diagnosed within 2 years of each other, but we do not have the genetic link. So, it’s not a BRCA gene. They think it may have been environmental because we don’t have a family history.
So, I went through all my treatment at that age with young children, and then I went on and lived my life. Thought I was in the clear, and 13 years later my lower back was giving me trouble, which I have spinal stenosis so that’s not unusual. So I called up my back doctor and said, “You know, my back is really hurting more.” So he said, “Get an MRI and then come see me.” I went in by myself, which, you know, I was completely unprepared for this, and he said, “Yeah, you need a spinal fusion and a laminectomy and all this stuff, and we’ll do that, and by the way, there’s something over here under your kidney that you should talk to your oncologist about.” And I didn’t see the red flag. I mean, I know I should have, but I didn’t.
So I called up my oncologist at the same hospital, and he did another scan, and I went into see him and he said, “You have a tumor underneath your kidney in your peritoneum. It’s pressing on the ureter and the kidney is atrophied. And we also see some cancer in your liver and some of the lymph nodes at the base of your spine.”
So, I was off to the races. At that time he thought I was ER-positive, so I began treatment for that, and we had kind of a difficult relationship when I got sick. I mean, he seemed disappointed in me. That’s how I felt. Like, I was ruining his statistics maybe. And Tim and I had planned a trip to Iceland. It was already paid for and whatever, and I said to him, “Can we go,” and he would not say yes. He wouldn’t sign off on my going to Iceland. Finally at the last minute we said screw it, we’re going to go. So, we went and we had a great trip! In the middle of it, he emailed me and said, “Stop taking the medicine, your white blood count is really low. Come and see me.” And I said, “Well, I can’t. I’m in Iceland.”
I went in the next week and he just was not empathetic or supportive or whatever the word would be. And I had said to him at one point… the first question you have when you get a metastatic diagnosis is how long do I have? When am I going to die? And he said, “Well, I hope it’ll be long after I’m in a retirement home in Florida.” It pissed me off. I just looked at Tim like, this isn’t about him. This is about me, and I don’t care when he’s in a retirement home. It just infuriated me.
So, on that note, I called up Dana-Farber and made a call for a second opinion and went in and met with an oncologist and fell immediately in love with her. Loved her. We both did, and she said, “Well, I’m going to continue your treatment for now, see how you do, and do you want me to let your other oncologist know?” And I said, “You’ll break up with my oncologist for me? I don’t even have to do that?” And she said, yes. And I said, all right! So, she broke up with him for me.
I continued that treatment for 9 months. I tried a couple different treatments and nothing worked, and the cancer was spreading. I had now seven tumors in my liver, and I was naming them the seven dwarfs. So, finally in December of that year, my oncologist and I decided to do a second biopsy of my liver, and we did, and it came back that I had mutated to triple-negative breast cancer. Which is weird because it’s more common in African American women and young women, and I’m old and white. Less than 7% of people mutate from one to the other. So, it was really odd.
So, on that note, I agreed to do a clinical trial with immunotherapy combined with chemotherapy. I went into the clinical trial and I was on it for about 3 months, and I was really, really sick. I mean, I was bald, emaciated, not eating, not doing well by any means, and I felt myself withdrawing. Like, I felt myself withdrawing from the world around me. I just wasn’t coping, and then I landed in the emergency room. They thought that I had an infected port so they put me on antibiotics, sent me home. I spiked a fever and couldn’t stop vomiting and ended up hospitalized again. They thought that I was in hyperinflammatory syndrome as a devastating consequence of the immunotherapy.
Tim Bigelow: Well, let’s put it this way. It took them a long time to figure this out. I was there. She went into a coma. They thought it was that the infection was going rampant, and they kept focusing on that. Then it became apparent, that whoever they had up in the ICU was at the time realized that because they had her on a high dose of steroids, it seemed to be working. So, they kept that up even though a lot of the other docs said, “Wait a minute, we still think that this is” — including her oncologist — “that this is an infection.” And it turned out that’s when they realized it was hyperinflammatory disease, and it was attacking every organ in her body and shutting them down.
Barbara Bigelow: So, I was in a coma in the ICU, and they were like, sitting vigil, and it wasn’t going well and ultimately — and I was one of the first people to do this immunotherapy, so…
Tim Bigelow: With breast cancer.
Barbara Bigelow: For metastatic breast cancer, and they hadn’t had a lot of people show up in the ER presenting like I did. Now, today, if you showed up in the ER and you were on immunotherapy and you were having this reaction, they would know what to do. So, trial and error. They figured out that I needed high-dose steroids to reverse what was happening.
So, when I woke up from the coma I was on dialysis, and I couldn’t walk or swallow or use my hands. I was completely incapacitated. So I spent a month in the hospital while they were working me up. Going to dialysis every other day. And then at some point after the end of the month, I was well enough to be transferred by ambulance to an acute rehab hospital. And then the work began, because at the acute rehab hospital, they did intensive therapy. Hours every day of PT and OT, dialysis, and so forth.
They gradually got me out of bed, into a wheelchair, and then from an upright position in a wheelchair they got me onto a walker, and then they got me to walk with a cane with a gait belt. And I weaned myself off the dialysis, which I was very determined. So at the end of that month, I was well enough that I could walk with a cane or a walker. I had also reached the point through exercise with a speech pathologist, a swallow specialist, to swallow. So I was finally off the liquid. I had lost 42 pounds, and I’m not big anyway. So I was able to go from a liquid diet to a more substantial diet and so forth.
By the end of that hospitalization I was eating peanut butter and jelly sandwiches and ice cream, and it was great, and I went home. Then once I got home, I had home services. So, I had a nurse that came and checked on me. I had PT that came to the house and continued doing exercises with me, up until the point I was able to go to an OT clinic on my own and continue there.
So it was a really long recovery period. And people say, oh my God, you should never have done that. That was horrible. The weird part of the story is, despite that adverse reaction to the immunotherapy, it worked. All my tumors melted away. I do not have any evidence of active disease, and I haven’t had any treatment since then. So, I’ve had no treatment in almost 4 years.
Jamie DePolo: Wow. So, tell me a little bit about this project, Beneath the Breast. You know, how did you get involved? You are a member of METAvivor, correct?
Barbara Bigelow: I’m on the Board.
Jamie DePolo: Oh, you’re on the Board, okay. And so just tell me about the project and what it meant for you two to be involved.
Barbara Bigelow: Because I told you that I’ve been well for the past 3 and a half, almost 4 years, so I feel it’s my obligation to give back and to do stuff to fund research for metastatic breast cancer because so little money is given to that. So, I got involved with METAvivor and through that collaboration and doing a lot of projects with them, I eventually was elected to the Board. So now I’m on the board of METAvivor.
Eisai, which is this crazy wonderful, wonderful pharmaceutical company, has partnered with METAvivor for 10 years now. But in the last several years they’ve come up with this project called #ThisIsMBC. The first year it was called Serendipity, and then the next year it was called Elements, and I was in the Elements campaign. And all of the campaigns involve water as being representative of the disease, because water is unpredictable. When I was in the Elements campaign, they took my daughter and I to North Carolina, made us naked, wrapped us in sheets, and put us in a lake and photographed us in the lake. And the pictures are beautiful. They’re really incredible.
So, that was the Elements campaign that I was involved in. Then after that I walked in New York fashion week for METAvivor and CancerLand. And then this year, the new project came about, which is Beneath the Breast. And what we decided to do was to take eight individuals with metastatic breast cancer, men and women, and their partners. We took them to New Jersey to a retreat, and there we photographed them and videotaped them and did workshops with them.
The focus of this Beneath the Breast project was on the relationship between the person with the cancer and their partner. And I personally did workshops with all of the patients on the hurdles they face having cancer and the joys that they face. So we did this wonderful work together where it surfaced a lot of underlying issues, and some of these couples had not left home in years without their kids, so it was like a breakthrough thing. During that process of doing that workshop, at the end I had each person write a love letter to their partner, and then I took them home. In the subsequent months after the project, I mailed them individually at various times. So, when they were not expecting it, they would get a love letter from their partner. So, that was kind of awesome.
Jamie DePolo: Yeah.
Barbara Bigelow: And Tim was there helping the photographer because he needed assistance with the beautiful photographs that you see here. So Tim helped with the photography while I was doing the workshops.
Tim Bigelow: I had a lot of fun doing that.
Barbara Bigelow: It was incredible, though, how the couples found such connectiveness with each other and with us. We ate lunch and dinner and breakfast together as a big group all the time. You get to know people really well in those circumstances, and it just was so meaningful the way that they could reconnect and find some things that they might have lost and work on some things that might be issues in the future going forward. I left there with this feeling like I wish we could do this for every metastatic patient because the work is so meaningful.
Jamie DePolo: Yeah. For sure.
Tim Bigelow: And they all felt so validated. The caregivers who were there as well felt validated, felt empowered.
Barbara Bigelow: For the first time they didn’t feel alone.
Jamie DePolo: Right. Well, let me ask you this, Tim. As a partner, did you participate in any of the workshops? Did it bring up new things for you? New feelings?
Tim Bigelow: No, not really for me, but I know that it did for the other caregivers, particularly the one wife who I think came there feeling completely alone.
Barbara Bigelow: And out of her element.
Tim Bigelow: Totally out of her element, and she just…
Barbara Bigelow: And her husband is the one with the metastatic breast cancer, and he’s very vivacious. And I think she always kind of felt alone and like, whatever. And over the course of the retreat she really came out of her shell. And I think it’s because for the first time she didn’t feel alone as a caretaker. She told me she had never met anybody else in that situation that was the partner of the patient, because it’s unusual that her husband has breast cancer. Not that it doesn’t happen.
So, you could see her awakening to this, and she was so happy and so joyful. This is their picture here, and they were so happy. I think it really meant the world to her. As it did for all of them. I mean, this couple hadn’t been away from home without their son, who’s 18. So, had never been on a trip without him. And this couple, they had three kids, and they haven’t been away since their honeymoon.
So, it was super empowering, and they had now the time to take a break and smell the coffee and look at the roses and focus on their relationship.
Jamie DePolo: Yeah. Focus on them.
Barbara Bigelow: Because when you’re living with this life, you’ve got all these medical appointments, work, kids, commitments. It’s nutty. It’s a full-time job having cancer.
Tim Bigelow: And it was really interesting coming to [San Antonio]. Last night there was a dinner by Eisai for the folks who participated, and when we saw them it was like seeing old family.
Barbara Bigelow: It was family.
Tim Bigelow: And we only met them and knew them for like 3 days.
Barbara Bigelow: But it was like family. We had a breakfast this morning and they did a patient panel, and they said that they felt like family, and it was just really amazing. I mean, I wish we could do it for everybody. The Elements campaign that I did was wonderful, too, but it was more of a... not a caretaker kind of thing. It was myself and my daughter. Teresa and her daughter. Mac and his wife. I mean, it was just a different vibe completely, in a great way, but different.
Jamie DePolo: Yeah. Well, let me ask you this. What happens to the Beneath the Breast project after this conference?
Barbara Bigelow: It will live on. It will live on at [MBCinfocenter.com]. All of the projects are archived there, and you can go on there and see the patients and hear their stories. See their videos. See the overarching video of all of them. And that will live on there like the Elements campaign.
Tim Bigelow: Now is that going to be on the METAvivor website as well? Do we have those photos?
Barbara Bigelow: There’ll be a link to it. There’ll be a link to it, just like New York Fashion Week. There’s a big link to that, too. That’s going to happen again this year in February, February 9. The theme this year is fearlessness, and it’s going to feature early-stage and late-stage breast cancer patients. So, it’ll be a little different than last year.
So, I think that... CancerLand merged with METAvivor this year, and so that brings a whole level of creativity to the table. Not that it wasn’t before. And I think this is very much an evolving campaign, #ThisIsMBC, and it will evolve and there will be another iteration next year when we come back. The theme through all of it is water. I mean, that’s what ties it all together, but I mean, this was just a dazzling event.