Claim your Power, With Guest Avena Ward

A Breast Cancer Diary

My friend Avena had never told me her breast cancer story before this interview, so I'm hearing it fresh right along with you, and of course, her insights blew me away.

Transcript:

K:

Today's guest is my friend, Avena Ward. She has been in my life just a short time, and she's been a writing partner to me, mostly online. We met each other through a local writers group called Willamette Writers here in Northwest Oregon. Avena lives in Portland, and she is a two time breast cancer survivor with a long history of dealing with thoughts about breast cancer and recovery from breast cancer. She had a long space in between her two diagnoses. Her second breast cancer occurrence was a second primary breast cancer occurrence in the contra-lateral breast. she has an interesting story to tell, and I'm so glad to have her here with me today.

A: Thank you, Kathleen, for inviting me. I'm, uh, I'm anxious to share my story with, uh, other, others who are approaching this for the first time.

K: So one of the questions that I wanted to ask you about your story is, is there anything that surprised you early on, especially around your first diagnosis? You were 42 years old, this was a few decades ago, so quite a while back, but what surprised you most at that time when you learned about your diagnosis?

A: I think the fact that I had cancer at all surprised me the most. At 42, um, I had been debating whether to have a, a first mammogram, but I had breastfed both of my children for extended periods of time, uh, my daughter for two years and my son for 14 months. I had been a card carrying La Leche League member and we talked a lot about how breastfeeding confers some resistance to breast cancer. So I just was shocked when one day in the shower, I put my hand on my breast and felt a lump. Uh, and so it took me a very long time to even bring that to the attention of a doctor.

K:

How long?

A:

I think I found the lump in April and I didn't have imaging of it until July, and then I had a biopsy in August, so it was several months.

K: How did you deal with the diagnosis itself? A:

Again, just shock. And, um, my mother had recently died of lung cancer, not breast cancer, but nine months before my surgery, mom had passed away. And I had experienced a period of, a long period of deep grief after losing her at the age of 63. And so I was just coming out of the grief darkness when I found my lump. And, I found that my family didn't have a lot of capacity for handling the shock either.

K: Hmm. Did you take your time deciding what to do and who to let guide you down this path or was it a quick process? A:

I took my sweet time, yes, deciding what to do. And I guess it surprised me too, that I found in myself some really strong opinions about how I would proceed. And so part of that process was interviewing various surgeons. And at the time then the internet wasn't what it is now. You couldn't just go and type in breast cancer and get a whole bunch of information. But I went to the bookstore and I got Dr. Susan Love's breast book. And several other books on cancer, and read those, while I was interviewing these three surgeons. And then, I think, I was surprised about how I felt that I wanted to be led to the solution in a sort of spiritual way, rather than necessarily by data. So, I took a sail out on Lake Michigan at the time with the last book, and when I closed the page, I allowed myself to be in meditation. And that's when the treatment path that I wanted to choose came to me. So actually, when I was visiting those surgeons, I already knew what I wanted to have happen. K:

And, can you describe what that was? A:

Yes, I had decided that even though my cancer was stage one, that I did not want to have chemo or radiation. And so, the solution was a mastectomy—a radical mastectomy, and when I went to the surgeons with that solution, no one argued with me. I was surprised—my family argued with me, but my, but my surgeon said, “no, I think that's a good idea.”

K:

Yes, and radical mastectomy is not something we see very much anymore. That includes all of the lymph nodes? A:

Exactly.

K: Do you think that taking all the lymph nodes is what made them feel most comfortable with not doing chemo?

A: I think so. I think so. Yes. And of the three surgeons I interviewed, the third one was the oldest and had been doing breast mastectomies for the longest time. And he did the lymph node dissection as well, and said to me, “you will live to be an old grandma.” So I took his prophecy to heart!

K: Was that here in the Portland area? A:

All of this was in Chicago. He was a surgeon at Rush Pres St. Luke's Hospital.

K: So talk a little bit more about the stress that you were under from losing your mom and how you feel that's connected with, if it is connected with your diagnosis and the progression of your cancer. A:

Yeah. There is something about grief that’s like being a drowning person and being taken under, I felt like I had been taken under by the grief of losing my mom at such a, a pivotal time in my mothering and in her life. She was 63. My parents had just retired. She loved life and she loved her grand-kids and I was looking forward to my children knowing my mother. And so there was this huge betrayal. A betrayal. You know, life is not fair. And my kids were six and ten when my mom died. And since, since that time and in my career as a pastor, I've met several women whose breast cancer diagnosis came on the heels of the death of their mothers. So there is something pretty significant to losing that primary connection of nurturing and then having something occur with the organs of our body that nurture. K:

Yeah. So tell me about the second occurrence. How much later was that and what did that look like?

A: After my surgery the first time, within a year or two, I was able to kind of put that in the background and live life fully. Uh, I mentioned ministry—the occurrence of the first cancer really also evoked in me a desire to change careers. So I chose ministry and went to seminary after the first occurrence, and I had a wonderful career of 20 years plus in ministry. And then I had retired in 2017 and moved to be near my daughter who had moved from Chicago to Portland. So, we relocated, and my daughter was a midwife in Portland, and so when I was establishing my care with doctors and, uh, other practitioners in the area, I relied on her to refer me to people. Before I left Chicago, I had had some interesting symptoms in that remaining breast. I had had some discharge from my nipple—clear, fluid, no pain, no blood. My primary care back then had cultured it. She had had me have the mammogram, the ultrasound, and eventually the MRI, none of which was conclusive for anything. So I arrived in Portland with this sort of lingering thing in the background, and my daughter, the midwife, said, mom, if I'm gonna refer you to anybody, I'm gonna send you to Amy Thurman. She's the most thorough imaging specialist in the Portland area. K:

I know her too! That's, that's crazy because I was just thinking about her today. A:

Yeah? And so I went to Amy's office and had my first mammogram and I expected to just skip away and they said, “um, we think you ought to come back and have an ultrasound.” So I said, "well, it's almost Thanksgiving. I think I'll go and do Thanksgiving things and come back." And I came back and the ultrasound was, “hmm, I think you better have a biopsy.” And every time I'm thinking to myself, okay, I can deal with this. And Dr. Thurman is incredibly thorough. So when she was doing the biopsy of the one spot that they had seen, With the ultrasound she said, “oh, there's another spot there and there's another spot there, so I'm gonna biopsy all of those,” and sure enough, there was a field of stage 1-B--both ductal and lobular.

K: Oh! So lobular showed up that early—in the biopsy? A:

Yes. Yes,

K: Wow.

A: Mm hmm. So, again I went into myself—I did consult with my Ob-GYN who said, “you know, we want you to get this taken care of and we'll give you as much support as you like.” And I said “I like to interview surgeons” and she said “fine, I'll give you the names of several” and so I was very supported by that. Dr. Thurman called me, my Ob-GYN kept calling me just to make sure I was okay, but I was doing my discernment process and I chose, again, to have a mastectomy. This time just with the sentinel node biopsy. And I interviewed a couple of surgeons, brought my daughter along, and my husband along to the appointments. And I chose the one who cried with us. Again, I think I let my heart lead. They both seemed like very competent surgeons. Lots of great experience. Wonderfully knowledgeable. But the one who cried with us is the one I went with.

K: Beautiful. So I want to hear about the different procedures that you had—how did your body look after the first surgery, and then how does your body look now?

A: The first surgery I went with I found, of course, the surgeon I wanted to work with. And he said to me, “Have you heard that you could have reconstruction?” And I said, “Of course I have, but I don't, I don't want anything foreign in my body.” And he said, “Oh, well, do you know about TRAM flap?” I'm like, “What's that?” And he said, “Oh, I have a plastic surgeon I work with who does wonderful work with TRAM flap. I'll introduce you to him and he can tell you more about it.” In the meantime, I, I did my reading on it. TRAM is short for transabdominal, abdominus recti-something. The M, I don't remember. And “FLAP” is that they take a piece of skin from your abdomen and graft it into the surgical site where they've removed the breast tissue. And so, it sounded perfect. They're using my body tissues. My abdominus recti which are the two long muscles that connect from your ribs down to your pubic bone. They are detached and moved under the skin up to a point in your pectoralis muscle. And they become the blood supply for then fat and skin that are grafted from your abdomen. And they explained to me, because they were removing the abdominus recti, which kind of hold in your belly stuff, that they would put a piece of mesh across my abdomen at the same time, that this would be major surgery. It would be done at the time of the mastectomy and then it would be about six hours of surgery, but they felt at my age and physical condition that I was a good candidate for that. And it so happened, the day they were performing the surgery on me, the mastectomy team came in and did their work, but the people who were supposed to do all the TRAM flap work were, residents and they were called away to a serious accident. And so they left me on the operating table, open, while they took care of what they needed to take care of. And then came and operated on me later. So I was under anesthesia for 10 hours and no one informed my husband. And so he was a basket case. And having understood that I'd be under for maybe five or six hours, uh, he just did not know what was happening. And that also required a five day hospital stay back then, so that they could assess how the grafts were doing and make sure I didn't develop any infections. Pretty heavy duty, uh, surgery. Not, not something to wink at. I don't think I had gotten the full impact of what that would be. The recovery was very painful because of the amount of movement of things in my abdomen and then about six months after the graft was firmly in place, I went back for a procedure to try and create a little nipple on the grafted skin that formed the breast platform. And then they tattooed an areola on that. It hasn't worked, that tattoo. It's faded on me twice. I've had it tattooed twice. It just fades. So, but I was very happy in spite of the long recovery from that—I was very happy with the result and lived a very comfortable life, comfortable in my body, able to wear bathing suits and I even developed the ability to do sit ups after they had taken my abdominus recti, for the 25 years that I lived with that. The second time around, I had the assessment again, but well, I had heard perhaps they could take tissue from my gluteus, my butt area and rebuild. But as the doctors described it, there was way too much uncertainty about whether they would be able to harvest enough tissue to match the previous reconstruction. And as I listened, I said, “you know what? I can live with a flat chest and a prosthesis, thank you.” So that is how I live now. I have the reconstructed breast, and I have a chest wall, and a nice silicone prosthesis that works most of the year. It's pretty hot in the summer, but most of the year it's great.

K: How are the scars on your body after the TRAM flap procedure? Where are they?

A: Thank you. Thank you for asking. Of course, because they're harvesting a lot of stuff from the abdomen, I have a big smile on my lower abdomen—actually had to have my belly button re-rerouted. So they, they took the tissue from where my belly button originally attaches in the abdominus area and punched a new hole for the belly button to come out. So there's the smile and the belly button. And then, on the breast itself, imagine an almond shape or an eye shaped incision with a graft of skin in there that came from my lower belly. Now, I had a lot of, uh, scarring from having babies on my lower belly. So now I have that tissue on my, on my breast. So it isn't perfect. It is by no means perfect. I don't think anyone looking at me naked would think that it's, that it's a real breast. But it has functioned as such under clothes for a long time.

K: Were you pretty happy with it after you had the TRAM?

A: Absolutely. Absolutely. Very happy with it.

K: So the skin showing on the outside where they created the nipple, that is skin that was transplanted

A: Yes. Yes. Um, after that surgery, about two, three months after the surgery, my doctor suggested, and I found a person who did myofacial massage. And they did a lot of work around the scar areas on the breast tissue, which was very helpful in getting back feeling. I actually can feel touch on the grafted skin. And she did a lot of work under my arm, where all the lymph nodes were removed as well. Because that can leave a lot of numbness, even painful, stretchy, stretchy fascia underneath there. So I would highly recommend to anyone to have some special massage after you have surgery cause I think it really helps restore feeling to the body.

K: Was that a physical therapist?

A: The person I saw was not a trained physical therapist. She was a myofacial massage specialist, but a physical therapist will do that. I know at Providence, where I had my surgery here, they have some people in their massage department, for cancer patients. I started to see someone after the second surgery, but then COVID locked everything down and I didn't have that opportunity. K:

Do you have feeling in most of the tissue nowadays? Do you have your, your nerves grown back or is it still somewhat numb?

A: And on the original. Yes, I still have feeling it's, it's quite functional. And on the new surgery side, there's still some, I have done my own kind of massage along the scar lines, to, to restore, to restore feeling, and it's been what, three years now? Almost four years. So, I feel pretty good in that area.

K: And how do you feel the experience of being a young breast cancer survivor affected your vocation as a pastor and a mentor, spiritual mentor?

A: Thank you… Huh, let's see. Lots of, there are lots of little areas I would point to where that was, where the experience of having cancer so young really was helpful to me. I, there were several members of my congregation, younger women, who were diagnosed and I think I was able to be with them very comfortably. During that process and to help them to claim their power, the power of choice about treatment and the power to choose life. I think a diagnosis at such a young age and where it came in my life after this period of depression could have really sent me back into, uh, into a dark place. But I think my spiritual life and my, also I had a woman pastor at the time and she was there with me, and a women's spiritual group. Uh, all of those things for support were really, really important, claiming parts of my spiritual tradition, to be able to lament and be angry and as well as hopeful and hopeful and happy. All those things were there and it was really important.

K: Your kids were at the age where they're verbal but not as body-self-conscious as like a tween would be. Do you feel—I mean it's never a good thing for a child to have to experience their parent in a trauma state—but do you feel like it was something that taught them something about you and something about life and was there some good came out of it for them? A:

That's a great question. My daughter is now 37 years old and she was six and seven during this ordeal with losing my mother and then with the breast cancer. It's very interesting, when I came home from the hospital after this major surgery I had several drain tubes still in my body tissues and I would dump them out in the sink and she wanted to watch that. She wanted to be part of that--help me with that. I think it helped to contribute to her vocational choice to be a medical practitioner. She is a midwife now. But there was another aspect of it that wasn't so great. And that was that she developed a fear at a very deep level, a nonverbal level, that she would lose her mother. Because here I had been through this grief over losing my mother, and then I had cancer and this major surgery. And, and it was, it was not verbal for her. And she only really uncovered it after I retired, moved out to Portland to be near her, and she was trying to get pregnant, and it wasn't happening. And she finally, through the help of some spiritual counselors, uncovered this deep fear that becoming a mother is connected to loss. And, after she was able to bring that to the surface, she was able to get pregnant and now has two children. Boy, that was a very deep and long process.

K: Sure. And then she was able to help you identify the source of your disease in the end. That's amazing. She was able to lead you to that wise practitioner who could see more deeply and take more time, look more thoroughly. Do you feel like she gives herself a little credit for that in the end?

A: I think she does. You know, she, she feels a little ambivalent because she would love not to have had to do that. But yes, I think she has been able to touch into the part of her that is a healer herself and to be with other women in ways that I think are much deeper than than just a midwife who catches a baby. K: I want to go back to a couple of the wise women that you've mentioned—Dr. Susan Love and her immense book on breast health—are there any memorable bits and pieces of that book that are still with you that you want to mention just to inspire others to go and get that book? A:

I just think at the time, it was so helpful to have the possible treatments and survival statistics laid out in that book. That was so helpful to me because I think the first time you hear cancer, you hear, “Oh, I'm going to die.” And obviously we all are, at some point, but there can be lots and lots of life between a cancer diagnosis and death. And so I thought that was very helpful to see that breast cancer is not a death, a death notice. And to see lots of—lots of different options laid out in her book. Those were the things I remember most. K:

The other wise woman that I'm thinking of, I don't want to skip over the opportunity to ask about the contrast in spirit--since you are a spiritual person--between that experience of looking for your second primary breast cancer occurrence in the kind of typical standard hospital setting, I'm assuming, and then going to a private clinic where you're getting a little bit more attention, or even just the, the atmosphere and the environment of those two, as well as Dr. Thurman's person herself. Can you describe a little more about what that contrast looked like for you?

A: Mm hmm. Oh, let's see. There's a contrast for me between people who are competent intellectually and physically competent, and then there's people who are caring. Uh, and I think I, I referred earlier to, I chose the surgeon who cried. And, and both of the women that I was choosing between were incredibly competent. The other woman gave me lots of statistics and lots of reassurance but I think the emotional piece wasn't there. Amy Thurman, again, an incredibly competent, and the thing I felt from her was dedication—like a commitment that women should not die from this totally treatable disease. And if she can help it, she's gonna make sure that that, that your survival chances are great. Um, but again, there was the care, the follow up call I got from her: “How are you doing with this knowledge?” Um, that makes such a difference. I also, I, I want to bring in there, I had friends, several groups of women friends who made sure to create kind of a ritual for me to surround me with love and lay hands on me and say, you know, we're, we're going to be with you through this ordeal. And the power of feeling that love and support physically cannot be underestimated when you go into something like this. To feel lifted up by the energy of people who love you. K:

Hmm. Are you describing the first instance or the second instance?

A: Uh, I think it was more the second time. The first time I, I was very private about my ordeal, I think. Almost maybe a little ashamed about being so young and having breast cancer. There is this thing about my body is betraying me. It's, it's not functioning. "What did I do wrong?" And I think that's a really important thing to, to look at. It's often what happens when we are, when something like this comes to us. And to, uh, to be able to say, you know, "I didn't do anything wrong" It's really important. And the second time around to have, to allow myself to be surrounded by people who affirmed that. "You haven't done anything wrong." K:

Hmm. Hmm. Yeah. Just even being public with your diagnosis is one step towards saying, "I haven't done anything wrong because if the shame is overcoming you, then you have to be private about it.

A: Right. K:

So you had just arrived in Portland and you already have that tight knit of a community around you to support? Was that a church related group?

A: It wasn't. It wasn't. When I first came to Portland, um, as a retired pastor then, I was committed to creating opportunities for women to express their spiritual inclinations without a rubric of a church. And so I would talk about it to every woman I met: “I'm going to have a gathering at my house and we're going to just do spiritual things without talking about God.” And so I used to put together a monthly gathering called the Women's Spirit Gathering. And I'd have about eight or ten women each time and we'd have some experience of going deeply inside and or outside and expressing, through poetry or just conversation or song or whatever—those impulses. And so the group of women that I gathered around me were from that. They were from everywhere. Yeah.

K: Hmm. Do you still meet with them?

A: I do sometimes. I had a gathering back in, um, March. K:

Well, it's really refreshing to learn more about your story here. I feel like so far you've heard a lot of my story because I write about breast cancer in our little writing circle, but you've been writing about family dynamics and adoption and racial tension within the family. And so I've heard that part of your life and I relate a lot to that as well because that's, that's definitely part of my life as well, but it's wonderful to hear your breast cancer story more publicly together, and to share that with others. I knew it would be lovely perspective that you would share and as is always the case, your situation is so unique and your story is beautiful. And I feel like even though it is a very, very unique story, it is, it is so relatable and I think it'll be valuable to listeners. So thank you so much for opening your heart in this way.

A: You are so welcome.

K: Is there anything else that you wanted to talk about?

A: You know what I wanted to share? When I had this second surgery I wasn't any less scared than I had been the first time. Right on the, on the days before surgery, I, I got pretty, pretty scared and I mentioned it to my daughter and she said, well, mom, you know that you can-- when your surgical team is all there and you're all prepped for surgery, but before you go in--you can call a timeout and the team has to come and listen to you. I was like, “Oh, really?” So, I had made up my mind that I would do that. I already had an IV in that was putting me in la la land, and they were about to take me under. But I said, “Timeout, I want to talk to you all." And what came out of my mouth was, “I want you to know that whatever you brought with you today, any pain, sorrow, discomfort, whatever, I want you to be able to let go of that now and be with me and I want to give you a blessing. That the good that you do to me will come back to you.” And then they put me under.

K: Wow. A:

My surgeon, according to my husband and my daughter, she came out afterward to tell them that it was over and it was successful. And she said, "I've just never had that happen before where someone blessed me before the surgery." So it meant a lot to her and it meant a lot to me to be able to offer that to those folks. So know that you have a whole lot more power and control over what's happening than you might think.

K: Yeah. What a wise daughter you have.

A:

Sometimes I think she's older than I am.

K: Wow. Well, thank you, Avena. It's been lovely to hear your story.

A: Thank you, Kathleen, for giving me the opportunity to share it.