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66. Anticipatory Grief- With Abigail Johnston
73 Plays4 years ago
Abigail Johnston is a daughter, mother, wife, and attorney who was diagnosed with metastatic breast cancer in June of 2017, close on the heels of a early stage diagnosis in March of 2017. In reality, the breast cancer had already spread to Abigail's bones before she felt the lump in her breast. The first few months after her diagnosis were a whirlwind and full of many profound changes, but Abigail soon found her footing and started her blog "No Half Measures," where she talks about whatever comes to mind, within the lens of her Stage IV diagnosis. Abigail's boys, Liam and Malcolm, who were nearly 2 and nearly 4 at the time of her diagnosis, along with her husband, Elliot, make their own appearances in Abigail's advocacy since it truly is a family affair. In 2017, Abigail discovered that she inherited the ATM mutation and further testing has revealed other somatic mutations; this is now her focus of research and she bugs her doctors regularly with articles and new information.
For Abigail, advocacy is a whole life endeavor and she never does anything halfway. Abigail works with Metavivor as a Peer to Peer Advocate, with Living Beyond Breast Cancer as a Hear My Voice Advocate, with After Breast Cancer Diagnosis (ABCD) and she started her own non-profit, Connect IV Legal Services, to recruit attorneys to do pro bono legal work for Stage IV metastatic breast cancer patients. Abigail is an active member of her local support group, Y2B2 which is geared towards younger women with all kinds of cancer and is a co-administrator of a metastatic breast cancer community, Living Metastatic One Day at a Time, where she helps to organize the "Sister Buddy" program so that no member feels isolated or alone. Outside of cancer advocacy, Abigail serves as a room mom for her boys' teachers and is a board member of her local PTA, serving as a Parliamentarian.
Just by reading this bio you can see that Abigail is a remarkable woman. When you listen to this podcast you will feel inspired to live a more meaningful life as well as to redefine what success means to you.
Contact Abigail Johnston:
Her blog: http://www.NoHalfMeasures.blog
Fb: https://m.facebook.com/profile.php?id=100001483493968
Twitter: @AMJohnston1315
Instagram: @amj1315
LinkedIn: http://linkedin.com/in/abigailjohnston
Contact Kendra Rinaldi to be a guest or for coaching:
http://www.griefgratitudeandthegrayinbetween.com
Music: http://www.rinaldisound.com
Logo: http://www.pamelawinningham.com
Production: Carlos Andres Londono
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Transcript
Redefining Success Beyond Metrics
00:00:01
Speaker
and being forced to drop some of those things and really to drop how I was measuring success. I think that's a huge thing that it's not about the how many clients I had or how much money I was making, but it's legitimately how well we love one another and how our connections to other people are. I think when you go through any kind of trauma,
00:00:30
Speaker
It crystallizes the things that are the most important. And I think we can all use some of that. Certainly, I could have before. I never want anybody to go through trauma. But at the same time, it transforms the way that you look at what you want to spend your time on or what things are the most valuable.
Introduction to 'Grief, Gratitude, and the Gray in Between'
00:00:55
Speaker
Hello and welcome to Grief, Gratitude, and the Gray in Between podcast. This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and transitions that literally shake us to the core and make us experience grief.
00:01:18
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys. I'm Kendra Rinaldi, your host. Now, let's dive right in to today's episode.
Abigail Johnston's Personal Journey
00:01:41
Speaker
Welcome to today's episode. Today I will be chatting with Abigail Johnston. Abigail is a daughter, a mother, a wife, and an attorney, and we will be hearing her story about how she even started her blog
00:01:56
Speaker
which is called No Half Measures, and her story around her diagnosis of metastatic breast cancer and how she's living and inspiring people around her today. So welcome, Abigail. Thank you for having me. I appreciate the opportunity.
00:02:19
Speaker
I'm glad you're here. And this is my first time talking to somebody that has either dealt through the process of grief from probably diagnosis to that. I've talked to people who have had loved ones be going through something and then their own journey of that grief, but never to the person themselves that's going through that journey.
00:02:44
Speaker
of a diagnosis, of a, I don't know, what would you say, what doctors sometimes give you, timelines and all these kind of things that they do, right, to living with that time stamp in your head or not. And so I am just very grateful for you to be here, Abigail, in sharing.
00:03:10
Speaker
Sure, I'm happy to share. I think that it is a subject that a lot of people forget that there's this anticipatory grieving and that there is the grief of those what we call little deaths in the process of a terminal diagnosis that
00:03:31
Speaker
idea of grief can really help in terms of addressing those things as well. It's not just for the end of their life or the end of that transition into death, but it's also for the experience of living while dying.
00:03:45
Speaker
Yes, thank you and thank you for saying that because that is so true. The anticipatory grief is probably sometimes even heavier, even as people, myself having been a family member of somebody that I had to also deal with that anticipatory grief myself as a family member.
00:04:03
Speaker
So, you as the person living it, that's a whole other level of that anticipatory grief as well. So, before we go into that, but now at least the audience has an idea of what we'll be talking about because I also like to, sometimes I like to leave some of the details
00:04:20
Speaker
in the process itself, but it's also good for the audience to know if it's something that they themselves want to listen to. Because grief is heavy, sometimes it can lead into certain emotions ourselves, if by chance even we're living with a diagnosis and maybe we're not ready to listen to something or things like that, right? So I like to just leave that out there for the audience to then choose if they want to continue listening or not.
00:04:46
Speaker
and be inspired or not, if this is the right time of day to listen and cry or not, whatever it is.
Life and Challenges in Florida
00:04:54
Speaker
I want you to share about you and your family and your life, and then we'll go into the day you got diagnosed. How does that sound going that way? Sure. That sounds great.
00:05:08
Speaker
So I was born in the Midwest. I was born up in Ohio and lived most of my life as a child with my dad as a pastor with a non-denominational group. So we moved around a great deal, but I graduated from high school and ended up in Florida. So both my husband and I went to the University of Central Florida in Orlando. We are proud Knights.
00:05:36
Speaker
And then I went to law school up in Virginia, Regent University, which is affiliated with the Christian Broadcasting Network. And then I moved back to Orlando and spent most of my time practicing law in Orlando. Most of my practice at the end was focused on family law. I also did a great deal of work in the foster care system representing children
00:06:05
Speaker
as a guardian ad litem, as an attorney ad litem, which really was my passion, but didn't pay the bills. So I also did the divorces and child custody and all of those things. Then my husband and I have two boys. So my oldest son was born in March of 2013. So he just turned eight.
00:06:29
Speaker
And my little guy was born in May of 2015. So he is going to be six, coming up here soon. I still can't believe how big they've gotten to have a kindergartner and a second grader. So, so mind blowing to think about. So, so yeah, we've, my boys are Florida kids. We just came off spring break and I think they spent the entire week in the water.
00:06:56
Speaker
So that's kind of a normal week actually around here. That's awesome. So there's a chance I might end up being able to meet you in person one day because my sister lives in Orlando. So that'd be awesome. Oh, okay. Yeah. Yeah. Well, we're down in Miami. We're in Miami.
00:07:18
Speaker
Oh, you're now in Miami now. We're in Miami now. Yeah. OK. So you were in Orlando and then moved. OK. So a little bit farther. But that's awesome. Well, I'm glad that you shared that then with the kids. So about the kids. So now the kids were then two, I was trying to calculate, two and three, no, two and four when you got your diagnosis. So tell us then about that, because yeah.
00:07:47
Speaker
your doctor's appointment and then just kind of how you found out.
Breast Cancer Discovery
00:07:52
Speaker
So in January of 2017, I was tandem breastfeeding. So I was still nursing both of my boys. They were one and three at that point. And I felt a lump in my left breast.
00:08:06
Speaker
And I had had multiple clogs in actually that exact same area where I felt the lump and at first I thought it must be a clog. I actually had an overabundance of breast milk. So not only had I nursed and pumped every two to three hours for four years, we also were able to donate about 25,000 ounces during that time to people who were unable to produce breast milk
00:08:35
Speaker
for their children and I suppose it's somewhat ironic to look back that a lot of the first milk that I donated ended up being received by a lady who literally gave birth to her twins and then was wheeled down to the chemo suite to have chemo. She was diagnosed with breast cancer while she was pregnant, somewhat foreshadowing, I guess.
00:09:00
Speaker
People forget, I think, that there's actually a large amount of women who are diagnosed while pregnant, while nursing. And one of the things I like to share with people is that while breastfeeding reduces your risk for breast cancer longitudinally, meaning over your entire life cycle, it's actually in the first five years postpartum and while breastfeeding that you actually have some of the highest risk.
00:09:30
Speaker
And I think you can imagine why that would be. We have a ton of estrogen flooding through our bodies, right? And a ton of other kinds of hormones. That's the stuff that makes us a little crazy when we're first pregnant and new moms and all of that. So, you know, it being so important that while you're going through those life changes to be really upping your self-exam game because your body is changing, you don't always gonna know what you're feeling, et cetera.
00:10:00
Speaker
So anyway, I felt the lump. I immediately went to my lactation consultant because again, I had had clogs and I thought it must be that. And she said, you know what, this just doesn't feel like a clog. Let's send you to your primary care physician. And my primary care physician said, I'm 99% sure this is nothing, but because of the history of breast cancer in your family, my mother is a breast cancer survivor.
00:10:25
Speaker
let's go ahead and send you for your very first mammogram. So let me just remind everybody, typically screening with mammograms doesn't begin until you're 40. I was 38 at this time. Because my mother had breast cancer, there was a history in my family, I could have gotten a baseline mammogram at 36, but I was in the middle of nursing and getting pregnant at 36. And so it just, in that time period, my doctors didn't feel like it was warranted.
00:10:53
Speaker
Um, so fast forward to 38 in 2017. I had my very first mammogram, uh, sprayed milk all over the machine. The technician was very upset that there was breast milk everywhere. Um, but, you know, got some. That's like, that's like for a cop. I have you written a book. I know you're doing a blog. I have you written a book to Abigail.
00:11:22
Speaker
No, I probably, people tell me I should all the time. Oh yeah, yeah, right now that's like how you could start it right there, like that you could start with that little image right there of the face of the technician as the milk is squirting everywhere.
00:11:42
Speaker
Everywhere. Everywhere. Because it's adding that sense of the humor to already something that's so heavy, you know? So, okay. Sorry. So you're getting then the, and of course the technician's not used to, like you even said before, when you were nursing, you don't do mammograms during that time. So that's probably the first, first experience that technician had with that. Okay. So then you have that.
00:12:10
Speaker
they weren't expecting me to baptize the machine as they were squishing everything. So yeah, I mean, you have to laugh at these things, right? I mean, I think that I saw a meme somewhere about how a terminal illness causes a couple of different things and a morbid sense of humor.
Diagnosis and Intuition
00:12:30
Speaker
So yes, I definitely have that morbid sense of humor.
00:12:35
Speaker
So anyway, did the mammogram. They sent me in for the ultrasound and they wanted to do a biopsy right then. Um, long story short, it was breast cancer and, um, it was an odd presentation and we know why now cause I have mixed types. So there was the lump, but then there was also these other areas of the cancer basically organizing itself. Um, and at first we thought I was stage two. Um, so I went in, did a lumpectomy.
00:13:05
Speaker
Uh, started chemo and, uh, the nurse made a mistake and checked a box to have my tumor markers tested. It's a medical mistake that, uh, actually helped me, but, um, tumor markers are a protein in your blood that is given off when, um, breast cancer or any other type of cancer is doing something is active. Right. Um, for me, I have bone only met, meaning it metastasized just to my bones.
00:13:34
Speaker
And the protein that is given off when the breast cancer is basically absorbing and eating the bone tissue was sky high. And so they immediately sent me for a bone scan and I had larger tumors in my femurs than I ever did in my breast. It was basically one bad step from my femurs shattering. And so with- Now let me pause one second.
00:14:01
Speaker
So by her marking the wrong little thing of having your tumor markers checked, that actually let them to know that you already had it in your femurs. Yeah.
00:14:18
Speaker
Wow. Yes. Yes. So it was just that little gift. It was a beautiful mistake to some extent, because then yeah, you were able to then find out. Yeah, not mistake, not a coincidence at all either. No, no, it's just that there are certain things that are protocol and certain things that kind of fall out of favor, right? And tumor markers are not
00:14:41
Speaker
Yeah, tumor markers are not super reliable. For some people, you just have that protein that they're testing in your body, or some people don't have very much of that protein, no matter what the cancer is doing. So, you know, it's one of those things where it's just not done as much, but yeah, it was an accident. It was a fortuitous mistake, however you want to say it. But one of the things that I didn't realize was that
00:15:09
Speaker
As I was going through the process of getting diagnosed, I asked my doctor, should we do a PET scan? Should we do a full body scan as I'm making these treatments and surgery decisions? And he very confidently said, that's just not standard of care. And because I had no cancer in my lymph nodes. So when they did the lumpectomy, they took the lump out of my breast
00:15:37
Speaker
they tested for what they call your sentinel nodes. So it would be the very first lymph nodes that would have been accessed by whatever fluid was coming out of my breasts. And so since those four sentinel nodes were negative, there was no indication that we should be doing a PET scan or a bone scan. Now I could have insisted, but there's so much that you don't know.
00:16:06
Speaker
at the very beginning of a diagnosis. And so, not just do I try to tell people, realize your risk after pregnancy is significant, but I have learned so much about trusting my body and knowing that when I feel something is off, I'm the person who lives in this body. And I have learned very much to say to my doctors, no, we need to follow this through because I don't feel right.
00:16:35
Speaker
I had been limping and had been dealing with a pretty significant amount of pain for quite a while, but they were, I had breast cancer. I didn't have cancer in my leg, right? In my mind, those two things were not connected. Now I understand so much more about breast cancer, so much more about how cancer behaves and just how it's so important to make sure that the doctors know all of the symptoms in your body.
00:17:06
Speaker
because I didn't then. I do now. I tell them every little thing in excruciating detail. Just like the squirting of the milk and the thing. There's a lot of detail. Abigail, let me pause you for one second. What is really drawing my attention is this absolute little miracle. Again, the technician putting that marker there because you had wanted
00:17:33
Speaker
You had a gut feeling of asking, you know, you wanted, you had asked them to do the PET scan. So you actually had asked for that. Then you were said no to. So it's kind of like your gut instinct was to have it done. Yet the doctor said no, but yet this little other side that then she marked that, that then you got the result. It was like.
00:17:55
Speaker
It's just so interwoven so beautifully for you to be able to have the knowledge of what was going on with your body. Exactly. Most people who are diagnosed with bone meds are diagnosed because a bone shatters.
00:18:13
Speaker
And when a bone shatters, that means you've got little pieces of the bone that get into your bloodstream. You've got all kinds of cancer that gets into your bloodstream. It, I mean, it could in extreme situations, those little shards of bone could travel somewhere very significant, like your heart or your brain or, you know, there are so many negative things that could happen when a bone shatters.
00:18:38
Speaker
Yes, I consider that to be such a significant blessing that we were able to find out that the cancer was there. And within a week of that, I was in surgery to get titanium rods put inside both femurs. And so even though the recovery from that surgery hasn't been amazing,
00:19:01
Speaker
But anytime your body is violated, they're pulling apart all the soft tissue to get to the bone, and then it's actually a drill where they're drilling down your
Family, Community, and Positivity
00:19:12
Speaker
bone. Anyway, it's very traumatic on your body. But I am so thankful that I didn't have a broken bone. My boys were one in three. And as that summer went on of 2017, they turned two in four.
00:19:28
Speaker
extremely active little boys. And so my mom spent most of the summer of 2017 with us in Orlando. And then once I got to the end of the surgeries, because I also had a full hysterectomy, we moved from Orlando and moved in with my parents. So we presently live in Miami with my parents. And that has just been so significant for
00:19:55
Speaker
those days when side effects or the testing or the mental health stuff or just all the stuff of living with a terminal illness, if I can't get up and take the boys to school, it's just a matter of running down to the first floor and knocking on my mom's door to say, hey, can you take the boys to school? And this is really the way we do cancer.
00:20:21
Speaker
is that we try to look very unflinchingly at what it is. I was told in 2017 that I had a potential chance of living two to three years. That's the median life expectancy for somebody with metastatic breast cancer. And so we try to look unflinchingly at what it is, at the possibility of progression every three months when I get my PET scans.
00:20:48
Speaker
But then look for those silver linings. And so for our family, a major silver lining has been being able to do life with my parents. I see my boys are loved on by all four adults who live in this household as well as other people in our community. And that is a beautiful thing. So looking for those beautiful things, looking for those silver linings that has been a great deal of how we cope with some pretty awful things.
00:21:19
Speaker
And it's so true. It's like just as hard as what you're going through. You're already going through something hard. Your mind is already telling you things and feeling things already around this diagnosis, around what your family is going through and so forth.
00:21:36
Speaker
that to be able to live with that heavy load, you have to be able to look again at those little moments of gratitude. And like you said, silver lining, the fact that your kids now are being loved by four adults at the same time and have anybody to go to at any certain time in their day to be there for them. What are some of these other silver linings that you've seen in this process of the diagnosis? And I want to know, too, more like how
00:22:06
Speaker
when you were told, you know, the two to three, like how you even coped with that too. Sorry, I asked too many questions in one sentence. No, no, no, that's okay. So I'll start with the whole diagnosis piece. So I was told in March of 2017 that I had breast cancer. That was kind of my first when we still thought it was stage two.
00:22:27
Speaker
And I think at that point, because I had seen my mom deal with an early stage breast cancer diagnosis, it was very much a, there will be a beginning, a middle, and an end to this. Okay, so we have to hold our breath, we have to get through this year or so of treatment, and then get to the other side and put it behind us.
00:22:48
Speaker
And I think that a lot of that has to do with the way that I've seen my mom deal with her breast cancer diagnosis in that there was a beginning, middle, and an end. She allowed it to shape what she was doing afterwards in terms of diet, in terms of lifestyle changes and those kinds of things to hopefully reduce her risk of having a reoccurrence. But cancer never became this thing that was
00:23:13
Speaker
a present issue for her. And so I thought I knew what we were going to be doing. We had our plan. And then, of course, in June of 2017 was when we found out that I had actually been stage four from the beginning. And so I'm a planner and I like to understand. I like to know what's happening. I like to order everything.
00:23:38
Speaker
And so in June, when we were told that it was actually terminal, that there's the two to three year median life expectancy, my doctor did throw out that for those of us with bone only meds, that there's a chance that there might be a 10 year life expectancy. Trying to wrap my head around any of those numbers was just completely overwhelming. I mean, my husband and I just drove away from that appointment in tears.
00:24:07
Speaker
And so legitimately that began a Wholesale change of everything in in my life and so back to that idea of the silver linings When I heard the words, you know, it's terminal the very first thing that came to my mind was I haven't had enough time with my kids and of course then they were two and four and I very much had a very real
00:24:37
Speaker
The thing that upset me the most was the possibility of them not remembering me and my husband getting remarried. And so I was irrationally angry at this theoretical new wife that of course didn't exist or anything, but was just really very much, was very angry at this person and kind of focused my anger at receiving such a terrible diagnosis on this person who was going to take my life from me.
00:25:06
Speaker
And I realized, it took me a little while, but I realized that that wasn't the right place for my energy to be put. That first thought that I had, which was spend more time with my kids, was the right goal. That instead of focusing on a negative, my kids, you know, someone's going to replace me, focused on, well, what can I do to maintain my presence in their life?
00:25:34
Speaker
Within a couple of weeks of knowing my diagnosis, we closed my law firm and dispersed my clients, dispersed my staff. We had contracts to get out of. So it took a little while to wind everything down, but that was a huge, it wasn't a waste, but that was a significant recipient of my energy. I mean, I was prime kind of in the middle of my career.
00:26:04
Speaker
expanding the firm and looking for towards financial goals, towards other professional goals. And really just overnight that became mostly irrelevant. So close the firm. We moved so this way I could be a stay at home mom, which was never something that I thought I would want to do, even growing up.
00:26:35
Speaker
That was one of the big changes or the big silver linings is that I get to be a stay at home mom.
Career Transition and Advocacy
00:26:42
Speaker
We planned well. I have private disability as well as social security disability. And so that gives me the room to be able to do that and to be able to be with my kids. But then it's also given me the ability that time to use my legal training
00:26:58
Speaker
and experience to then help other people with legal issues that are living with terminal cancer because it is important to keep your mind active and talk to adults every now and again. So the advocacy in the cancer space has really been the big difference between my mom's experience and mine in that, you know, there's no escaping cancer for me. Cancer will be
00:27:26
Speaker
in me and in my body and growing until it kills me. And so there is no beginning, middle and end. And I think that's been a big adjustment overall. And now it's become a whole family thing. So I've had my mom speak at a couple of different things. She's never spoken at anything before. My dad and I moderate a biweekly support group for people who are living with terminal cancer. And so, yeah, it's become
00:27:53
Speaker
an advocacy thing really that the whole family is involved with. Because I think they see from the front lines how important it is to educate people on living while they're dying. I mean, that's I think the thing that people forget, right? It's not like you get a cancer diagnosis, even if it's a terminal cancer diagnosis and you're dead the next day. There are people who are living for years with this.
00:28:20
Speaker
holding our breath every three months when we get a scan. And so educating others on how to do that and then, or educating others on what that looks like and then educating others on how to live and really live in that space has become a huge focus.
00:28:40
Speaker
I was like, as you see here, because you can see me, I got so moved when you mentioned of your law from becoming just secondary, right? In that moment of really realizing what our priorities truly are in life. And I think that this is one of those things that if we take these learnings from somebody that's already facing death, right? Death is right out your face.
00:29:09
Speaker
wake sooner, at least you know. None of us know. We all have. We're all going to die, right? But most of us don't have the knowledge of the when. You have a timeline of the when. Most of us don't even have that, right? But by you knowing that, creating those priorities really in your life and what's important, I just
00:29:33
Speaker
It's just so valuable for all of us to live in that way because we spend so much energy and time and things that really ultimately aren't going to be the things we would want to be doing with our life if we really truly knew that today was the last day of our lives.
00:29:54
Speaker
and for you to now be an advocate towards others and helping them kind of live their lives to the fullest in their knowing their own mortality at that time. That is huge. Tell us how the aspect of, because you mentioned now the whole families and your dad, your mom, your husband,
00:30:18
Speaker
How is it for them? Because one thing is for you having your own, and I know they're part of this team, but how is it for you all as a family that you deal with the grieving process? And for the kids, too, and how you have kind of shared with them throughout their lives. That's all they've known has been mom probably going in and out of the doctor. So take us on that chapter of this journey, please.
00:30:46
Speaker
And I'm sorry if my tears, if I'm over here, I'll move. You're probably used to people crying when you talk to you. No way. I'm just moved. I moved. I moved.
00:30:57
Speaker
We did a bunch of legislative advocacy last summer, and legitimately, that was our mark of whether or not it was a successful advocacy session as if the healthcare staffer was crying. Yes, yes, that's a good thing. No, it's a good thing. It's like, if there's tears, it's good. I'm moving. I'm touching their hearts. Yes, yes, exactly, exactly. It's a weird mind space to be in, and it is fascinating that
00:31:27
Speaker
recently I had brunch with some friends that are not with, don't live with cancer. They're friends before my diagnosis. And it always fascinates me that I'm talking about something that's just normal in our circles, you know, a side effect or something. And, you know, I'm just talking and sharing with them what's going on. And I look up and all of them are in tears. And, you know, I forget sometimes that because there is so much suffering
00:31:56
Speaker
within our community that we tend to normalize that, you know, Oh, that's just the side effects that you got to deal with. And, you know, getting some of that perspective and taking two steps back and saying, Oh, wait a minute. Yeah, this is really hard. I don't have a choice. I have to deal with it. I have to keep putting one foot in front of the other, but, um, it is sometimes valuable to understand and hear that. Yeah, this is big stuff.
00:32:23
Speaker
And so I think that's kind of one of the first things with the, you know, my kids with our family that we're trying to be very transparent and open about how this is hard. Um, I, um, am somebody who has always been a caregiver who has always been, you know, the organizer, the person with the energy.
Support Systems and Caregiving
00:32:43
Speaker
Um, and since that's changed, I mean, that's really changed a dynamic, not just in my marriage, but in my, my family as a whole. And so,
00:32:52
Speaker
adjusting to what that looks like, adjusting to those changes has not always been easy. I mean, several of my siblings have not transitioned well with that. And I think that besides being open and besides trying to be transparent as possible, allowing each person to deal with it in their own way.
00:33:16
Speaker
One of the things that I said to my husband at the very beginning was that he needed to be in therapy. And so he has a therapist that he sees regularly that's just there for him. And I think that's one of the pieces that everybody forgets about caregivers is that yes, the illness is happening to their loved one and
00:33:40
Speaker
That's almost ends up being a negative. The illness is happening to their loved one and all the attention is on the loved one. And then there aren't services and there isn't as much attention on the people who will be left behind. And so that was one of the things that I think has been huge for him is that there's a person that is just focused on him.
00:34:05
Speaker
The other thing too is that, you know, we, we have babysitters, we have other people who are coming in to help, which seems superfluous on a good day. Um, and, you know, totally offends my Midwestern sense sensibilities about things. Like I can do things myself, but it's been a process of me beginning to be more honest with myself and other people that I have limitations that I can't just go run all the errands with the kids that it, that just takes too much.
00:34:34
Speaker
of my energy. And so it's been a constant readjustment and rebalancing of the amount of help that we have. I think it's helped my parents to be part of the advocacy efforts because I think the other thing that people forget about family members is that they feel really helpless and they want to do something. I mean, especially the guys, right? They have to fix it. They have to do something.
00:35:00
Speaker
And so I have learned over time that, um, that having something that we can do together, whether that's fundraising or whether that's the support group or it's education, whichever it is, that that feeds a big part of, um, what people who would love me would want to do is to do something. Um, so many times we're told, Hey, just let me know whatever you need.
00:35:28
Speaker
And it's hard for those of us who are sick to be able to come up with an exhaustive list, but I have learned over time that being much more precise and specific about what I need, acknowledging what I need and being precise about that and giving people jobs is the wrong word, but giving people something that they can do. Yes, it does help.
00:35:54
Speaker
Yeah, it does help them because it feeds that need to do something. Somebody said it so beautifully in a group I was in about letting people earn their grace and just how helping is not just helping you as the person, but it is actually helping the person who's giving, who is helping. And so the idea of not depriving other people
00:36:23
Speaker
was significant to me as well, that it's not just about me.
00:36:29
Speaker
What you said is so key. I actually had this conversation with a friend yesterday. She's having surgery and I, but not nothing, you know, huge, but it's surgery. And so she was saying how her neighborhood already has the meal train and stuff going on. I'm like, okay, so I know you don't need food. So I said, what from who I am of who I am, what of the things you know of who I am? Can I serve you best while you're recovering? Because I am not necessarily the best one at like maybe preparing the
00:37:00
Speaker
food and taking the food to people like you know and I know like when my mom was going through cancer like we had so many different so it was so great but we had a lot in the freezer a lot
00:37:14
Speaker
but there were other things we needed. And so we had friends that helped us when we did our yard sale and helped us come over and take things over to, you know, things like that, you know, other kinds of ways of serving too. And so I think that that is so important, not only as the person that's needing the help to know this is what I need and being unapologetic about telling if somebody's really, truly wanting to help you,
00:37:41
Speaker
being, listen, I have A, B, C, D and E on my list. I know that you're great at this kind of stuff. You let me know if any of these are things that you can do. And also for those of us that are wanting to support, like you said, because it is that aspect of feeling so helpless because you can't take away the pain. We can't take away
00:38:02
Speaker
you know, the finality of things. And therefore being in some way, shape or form, having some purpose in this journey with the individual is so helpful for us. Like you said, it's part of our own grief process as the loved one, you know, as our loved one is going through something so hard. So thank you for giving those
00:38:29
Speaker
little tools there and tips as to what somebody that's going through it can do to ask for help as well as those around. Make sure you ask what you can be of help to that person. And it's so important to remember too that, you know, I think when people are initially diagnosed, you have those meal trains or you have that sense of being surrounded by people. I'm going on four years of living with this.
00:38:59
Speaker
And I think that it's hard for some people. I mean, I call it compassion fatigue, where everybody wants to help and deliver all the casseroles at the very beginning, which is significantly helpful. But as time goes on, the majority of those people go back to living their lives. And it's not something on their radar screen as much. And so, you know, it's as
00:39:26
Speaker
We talk about survivorship. Those of us in the stage four community aren't always, we don't really look at ourselves as survivors, right? Because it's not pest tense, because it's something that will always be with us.
Continuous Advocacy and Community Grief
00:39:39
Speaker
But looking at the existing or surviving between diagnosis and death, that's just a very strange space for a lot of us, because you have the people who were so intensely interested at the beginning who lose steam.
00:39:56
Speaker
The people who tend to stick with us for the long haul are other people who have experienced trauma, other people who understand that even for an early stage breast cancer diagnosis, this period after the treatment can often be more difficult than actually going through treatment.
00:40:17
Speaker
Now it's slightly different because those of us who are stage four are still always in treatment, may not be IV chemo, we might not be losing our hair, but we're still on treatment for the rest of our lives. Some shape or form, except for those few people who are able to come off all of their treatment. But that ongoing effect or the ongoing drain on energy, on health,
00:40:41
Speaker
on organ function, on whatever you wanna say, there's just an ongoing drain because of the treatment and the consistent scans, et cetera, that those people who are willing to stick with it, maybe it's a, you send a card once a week, maybe you call somebody once a month, just the people who are acknowledging that you're still out there, that this is still something that's going on,
00:41:09
Speaker
It's significant and it's significant to remember the family members who are still going through supporting somebody who's living with a diagnosis that is terminal. I mean, it gets to be a lot over time as well. So important to keep going with those people in your life who need to be supported. I think one of the things in our grief groups that we talk about a lot is just
00:41:36
Speaker
We remember and say the names of the people who have been lost in our community. And you don't get into advocacy in the metastatic cancer space without losing friends daily. So we do a lot of that in our groups, remembering each other's names, remembering and carrying on their legacies, their projects, the things that were important to them. And I know that's something that really helps the families that
00:42:07
Speaker
you know, we're continuing to talk about their loved one just as much as we want to be remembered afterwards and have our names and our legacy honored and continued, discussed, whatever the right word is.
00:42:23
Speaker
So, so, so important. You're so right. Now you've been then, not only are you facing the concept of death or that finality from your own diagnosis, but what you said was so important because you're surrounding yourself with other people that are going through the same thing that you're experiencing then that grief component
00:42:45
Speaker
Sorry, that's what I meant. The grief aspect of your own diagnosis, you're also then living that grief aspect for your friends that are part of your community, and then the grief once they've already passed away. So how do you, you mentioned your husband goes to therapy. What are some of the things that you do, Abigail, to
00:43:06
Speaker
fill your cup to have this energy to continue giving because even still here you're giving and giving you said you're Naturally a caretaker and that you're having to get used to be taken care of but all I hear here is still a lot of giving so How do you fill your cup? How do you fill your cup?
00:43:31
Speaker
Oh, that's something that we talk about a lot actually around here. 2021 is my year to look through all the things that, that I'm doing in terms of advocacy or caring for other people and weeding some of that out because I do spend a lot of time with that. But, um, you know, I think that the, as an introvert, one of the main things I do to fill my cup is, is alone time. I love to read and I love to do cross stitch and, um, I have a bubble bath that I take every day.
00:43:59
Speaker
Um, we have a massage therapist who comes weekly. Um, so, you know, that helps with a lot of the physical things. Um, I have sought out, um, a lot of the, what you would think of as complimentary care. So I see an acupuncturist and a naturopath. Um, I see doctors outside of the normal kind of Western tradition because I see a lot of merit in looking to
00:44:29
Speaker
to keeping your body strong. And so one of the things that has been part of that is yoga. And so while I can't always do all of the physical aspects of yoga, I've gotten very much into meditation, this concept of mindfulness and of working really, really hard to stay in the moment, which sounded so freaking cliche to me before all of this.
00:44:57
Speaker
because I was always doing 25 things and I always had 12 balls in the air and being forced to drop some of those things and really to drop how I was measuring success.
Redefining Success Through Relationships
00:45:10
Speaker
I think that's a huge thing that it's not about the
00:45:15
Speaker
how many clients I had or how much money I was making, but it's legitimately how well we love one another and how our connections to other people are. I think when you go through any kind of trauma, it crystallizes the things that are the most important. And I think we can all use some of that. Certainly I could have before. I never want anybody to go through trauma.
00:45:41
Speaker
but at the same time, it transforms the way that you look at what you want to spend your time on or what things are the most valuable. So again, my evaluation of myself or evaluation of what equals success is just very different these days. In a good way, I think overall, but I can't not acknowledge that I'm on antidepressants and I see mental health support
00:46:11
Speaker
to be so vital. I am very open about my treatment for depression, for anxiety. I use medical marijuana for pain as well as for other side effects. And I just think there's so much stigma about getting the help that we need. I think for people who are experiencing something they've never really experienced before, I mean, how often
00:46:40
Speaker
do you find a situation where someone has experienced the same exact trauma over and over? It's not typical. You're usually coming in as a newbie to whatever the trauma is. Or maybe you've experienced some level of grief before, but this is on a whole other level. And so I can't say enough the value of seeing a professional, but also the value of peer support. I mean, the people who can look at you or listen to you,
00:47:10
Speaker
and know exactly what you're going through when you say one word. I mean, legitimately, if I say chemo in my support groups of the other women who have been through that, they know what that means. It doesn't matter which chemo it was. They know what it's like from the physical to the psychological. And so again, those connections with other people, the professional and the peer support, I feel like are very complimentary to one another.
00:47:39
Speaker
You said something that just even made me think of the reason I even have this podcast is the fact of people not feeling alone when they're going through that
Peer Support and Mental Health
00:47:48
Speaker
process. And what you've, you know, attending these groups, this peer support of somebody else that comprehends the, like you said, you say one little word, they get it. You don't even have to say a word and they get it.
00:48:00
Speaker
They just know what it is you're feeling going through to some extent. And again, like you said, it may not be the same type or it's a different person. So not everybody's going to have the same outlook as you have on it, as somebody else. Because again, with grief, everybody has their own journey. So even with a diagnosis, not everybody has the same outlook in life.
00:48:26
Speaker
when they have this type of diagnosis, but you comprehend certain aspects of it and can relate and that is so important to have that community that understands you and so thank you for sharing that and the fact that also your loved ones then like your husband having then that extra support to be able to manage the fact of being the caregiver and also the idea of one point being
00:48:53
Speaker
a single dad raising the boys, so he has to wrap his head around what that's going to look like too. So going into the boys then, how much do they know then of what is happening in terms of, because they're eight and six,
00:49:11
Speaker
Do they know that what you're going through could lead to death? Are there books that you read to them? Are there any resources that help you communicate that with their little young little minds? It's very different as I'm sure you've thought that younger children versus older children, right? They tend to respond very differently to the sickness or the illness of a parent.
00:49:39
Speaker
We have worked very hard to be very open with our kids. They know that I'm sick. They know that there's cancer. We have not really talked about the concept of it being terminal because at this point, developmentally, the concept of time is such that that would not, they wouldn't understand that it wasn't happening right now. And so what we have focused on is
00:50:08
Speaker
doing a good foundational talk about we believe in heaven in our tradition, talking about the people that we've lost, that we can still talk to them, they can still see us. They're in essence still here because their energy, their spirit, their love is here. We like the books like The Invisible String, where our hearts are connected no matter where we are.
00:50:38
Speaker
And so we talk about those things and Living Beyond Breast Cancer has a great program where you tell them the ages of your kids and they will send you books to read. Most of the best books have been written by moms who have lived with a terminal diagnosis and wrote their own book to their own child because they got it.
00:51:04
Speaker
A big part of this is just getting them to talk through those things as much as many questions as they have. Of course, the teachers at school know everything about what's going on because as soon as my kids get to school, my mommy's in the hospital again, my mommy is sick, those kinds of things. So we have really tried to make sure that everybody in our boys' lives knows about my diagnosis so that they can provide support to the boys when they're struggling.
Support for Children of Cancer Patients
00:51:31
Speaker
this year for the first time they're both eligible to participate in something called Camp Casem. It's K-E-S-E-M and it is at most large college campuses and it is for children who have a parent living with cancer and it's run by college kids. It's typically supervised by a psychologist or somebody you know who would be adept at understanding if something was going on and it's
00:52:00
Speaker
It's not a time to discuss cancer. It's just that you're going to be with other kids or the child is with other kids who have very similar experiences. So this is the first year they're going to get to participate together. And it's online, of course, like so many things are, but, um, you know, I, I try to make sure that they have opportunities to bond with other kids that are not only their age, but have, um, you know, a similar experience, um, might be dealing with something similar.
00:52:28
Speaker
And, you know, my eight year old has a lot more questions than my six year old. So we're kind of taking that one step at a time as much as we can.
00:52:37
Speaker
I loved what you said because even though like I asked you if you had talked about them of what it was going to happen, you said something so important and it is the aspect that in their time, in their age, time doesn't really, time really doesn't make sense. Like when you say, I remember sometimes we'd have a trip planned that we're going to go to Disneyland or whatever, Disney World, whatever it was. We wouldn't even tell the kids because if not, they'd be asking every day. It's today that I'm like, forget it. We'll just tell them where we're going to go. Because if not, we're going to hear like, is today, you know, from here till
00:53:06
Speaker
So whatever it happens. So we would save ourselves that headache and just tell them when we're on our way. Rather than that anticipation that even though it's exciting. Makes perfect sense to me. Yeah, right. But then with this kind of thing too, you're right. Like by them kind of knowing that they're living or you're already living, you're holding your breath every time. Like why then add that aspect and component to their little lives of feeling like they have to hold their breath.
00:53:36
Speaker
every moment of their life. Because in reality, this is what they know. This is their life. This is what it's been since they were little. Even just when they go to this camp, Qesem, they're going to be, oh, oh, your mom also goes in and out from my two.
00:53:52
Speaker
Yeah, oh, that's normal. While at school, they don't have anybody that relates to that going in and out. They just think that this is just how it is. That sometimes a parent goes to the hospital often and this is what their normal is. And then just learning, you know, how to live around that and the things that they're learning, the resilience and the concept of love and support and that aspect of the tribe component, right? Of everybody helping each other. There's so many.
00:54:21
Speaker
things they're learning in this process without necessarily knowing the other part of it, which again, it could maybe, you know, something else, you know, happens that that's not even the, you know, there's no finale per se in life. Again, there's, as I say, we all are, we all have a time stamp anyway.
00:54:42
Speaker
So, um, uh, everything I could keep talking and asking, and it's so hard. Uh, and I hope that I've been, um, cause I tend to not be very good with being tactful. So I hope that if my questions were
00:55:00
Speaker
oh okay i'm like i i i just no no worries oh my god okay because it's it can't it's such a i'm gonna say sensitive topic okay it's such a sensitive topic and especially talking you know talking to somebody that's going through that so
00:55:18
Speaker
I appreciate you so much. Is there anything else you'd like to share of any other either resources or little tools or last words of inspiration here on the podcast that you'd like to hear leave for the listeners?
00:55:35
Speaker
Sure. I think one thing that has been a huge shock for me is the understanding of genetics.
Genetic Testing and Family Discussions
00:55:43
Speaker
So we found out that there's a germline mutation in our family. So not BRCA, the one that is in my family is ATM, like you get money out of the ATM. And that put me at higher risk for breast cancer. Now I did not know I had this
00:56:04
Speaker
mutation until after I was already diagnosed. And back when my mom had breast cancer, all they tested for was BRCA1 and 2. Well, now there's 40 different genes, 40, 40 different genes that are associated with a risk for breast cancer. And I just would encourage anybody, we went through fertility treatments to get pregnant.
00:56:27
Speaker
I'm not a person to look back and say, I shouldn't have done that, but that flood of hormones that we were forcing on my body most likely activated the cancer. I believe the hormonal imbalances I had were actually protecting me from cancer, from breast cancer specifically, because my cancer is significantly hormone driven. And so I don't say that to feel bad about what I did or look back just to say,
00:56:57
Speaker
If you are thinking about doing fertility treatment, if you are thinking about doing any kind of hormone treatment, hormone replacement therapy, or if it's a boy, any of the hormone growth, human growth hormones, injections, do some genetic testing. I think that everybody could stand to know more about what they might be predisposed towards. Certainly the 23andMe,
00:57:26
Speaker
or ancestry.com, some of the other programs that use DNA. That's not what I'm talking about. I'm talking about the genetic testing that's done by an FDA approved lab. But that information could have changed some of the things that we had done. That information for my sister, for my cousins has meant that they've made different fertility decisions, knowing that this is a mutation that runs in our family.
00:57:56
Speaker
I just think the more information you have, the better you're able to make decisions and finding out information like a genetic mutation early on in your life can then color how you do things and also the information that you pass down to your kids. I cannot tell you how many people I talked to where there was cancer or there were other things in their family that were just never talked about. And so they walked into
00:58:22
Speaker
an adult experience or an illness experience without knowing, hey, this is just part and parcel of my genes. I think that there can be a lot less blaming and I think there can be a lot less looking back if you walked into it with information or you've walked into it with more knowledge. So I think that's been a big takeaway for me is that talk about these things in your family, share the information.
00:58:46
Speaker
so that the younger generations are ready. The younger generations can decide whether or not they want to be screened. I am the oldest of six children and two of my siblings have still not gotten tested because they have no desire to know. That's fine. That's their choice. But I think that looking at genetics and thinking about that can be really, really important. And then the final thing I'll say is
00:59:15
Speaker
You know, don't forget the caregivers. Don't forget the kids of somebody who is ill. And don't forget them after their loved one has passed away. The families are left with a burden, with a hole, with their lives completely changed. And I don't think that many people would be upset at somebody reaching out and saying, I'm here for you. Don't need a response. Just I'm here for you.
00:59:44
Speaker
Yeah, or thinking of you just wanted to let you know just like those little simple acts of kindness, of thoughtfulness, or just showing up and saying, hey, I just thought I'd drop by. I was in the neighborhood. Yep. The good old, good old fashioned way if you live nearby.
01:00:03
Speaker
Oh, thank you Abigail. It's been such a pleasure. And I want to just say thank you to the friend that connected us. I won't say her name since she hasn't like shared completely about herself. But that is how we connected was this friend of somebody I know who is
01:00:20
Speaker
going through this diagnosis herself and is new to it. And she reached out and said, I have somebody for your podcast. She inspires me. She has a blog and she's a speaker. And I look up to her and how she views this. And this is, again, somebody that's in her early stages of knowing that she's living with metastatic breast cancer. And so that's how we connected. So thank you, dear.
01:00:48
Speaker
you're listening. So thank you. And thank you Abigail for taking this time out of your day to chat here and share with the listeners and with me all this beautiful lessons about life and how we measure success.
01:01:04
Speaker
how we can evaluate that in our lives and re-think that. And what would we do if we really just had to choose what we want to do for our lives? If we knew tomorrow was the last day, how would we really live? So thank you. Thank you, Abigail. It's been my pleasure. Thank you for the opportunity.
01:01:36
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
01:02:05
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning into Grief Gratitude and the Gray in Between podcast. Have a beautiful day.