Joy is a 65 year-old woman who grew up in Jamaica and came to America to be educated as a legally blind teenager. She offers insights to the breast cancer journey that only someone like herself could share. Joy is a strong advocate of professionally facilitated support groups. She had a single mastectomy followed by chemotherapy and radiation. Raising young children, she put off reconstruction for a decade. She glowingly talks about how the reconstructive process made life for her so much better. A poet, she shares her wisdom through words in her story.
My name is Joy, and I'm 65 years old. I was the eldest of seven children and I grew up in Jamaica until my early 20's. Around age 15 I started having serious problems with my eyesight. I came to the United States on a medical visa in 1970 and went to the eye and ear infirmary in Massachusetts where I was declared legally blind. Later I attended a rehab center in Newton, Massachusetts, called Carroll Center, where with other newly blinded adults received rehabilitation. I attended Springfield College for four years; graduated magna cum laude in rehab counseling. So I came to California in 1979. In 1986 by that time I was having some struggles in my marriage, and it was very painful, and in 1991 my husband abandoned us. My children are only 5 and 8 at the time.
I had gone to my primary care doctor for a regular check-up. And I remember it was around the time when I should have been having my period, but when she was examining me, I remember her saying your breasts are really lumpy, but I thought, well, they usually are right before my period, so we both dismissed it.
So later on, when I find this lump, all of a sudden even though I didn't know very much about cancer at the time, but right away I knew something was wrong. The next couple of days every time I took a shower I was hoping it wouldn't be there but it didn't go away.
A week later they did an ultrasound and I was waiting for the doctor to look at the results, so as I'm sitting there, he comes out and he goes, I just looked at your ultrasound and I think you have a bunch of cysts in your right breast and there's some in your left, too, but since your mammogram was clear two years ago I think we can just wait. You don't want to do a biopsy if you don't have to, do you? And of course I don't know anything so I said no.
So I left. A week later I get a call back. Another doctor called me up, and he said, I'm Dr. Wood and a team of radiologists looked at your ultrasound and we think you'd better come back for the biopsy.
I remember the biopsy was the needle core biopsy where I had to lay on a table with a hole in it where my breasts would hang through the hole, and it wasn't a painful procedure. The most uncomfortable was that I had to lay stilll for two hours, and they anesthetized the area and stuck I think five needles in, and then there was this clicking sound like somebody was shooting a bunch of staples into my breasts, I remember.
At 5:30p I got the call back and the doctor said, I'm sorry to say but what we found is malignant, but we think it's early; we think you have a kind of micro-invasive cancer that starts in the ducts; but we think it's just leaving the ducts so we're getting it early, so your primary care physician will contact you and tell you how to proceed. I kind of just went numb.
Now in my reading I had heard somewhere that it is best to do a mastectomy, like, I think 10 or so days after your last menstrual cycle and so based on that information we had the appointment set for January 28th.
The surgery was on a Tuesday and I ended up staying until Friday, and then I went home and fortunately for me I had a friend who was available to come and stay with me for that weekend.
So in spite of the fact that the original doctor who had given me the biopsy result and said it was early and was just leaving the ducts…that was not the case; I was between a stage 2 and 3.
We removed 15 lymph nodes; 8 of them had cancer so I had made the right decision in doing the mastectomy.
Then I had to go see an oncologist and make a decision about the next step. And I remember when I was talking to the oncologist, he was telling me, well, the treatment is worse than the disease. That wasn't encouraging. I had already done my reading and he was confirming it for me. I remember sitting on his table where the doctors usually examine you he propped up the back, and I'm sitting there and then he's putting this thing in the IV bag and he says I'm going to give you decadron. No, for the first one it wasn't decadron, the first one was kytril which was supposed to be some kind of anti-nausea medicine and then he administered adriamycin, which is known as the red devil, and he told me you're going to feel some tingling in your groin area, in your arms, etc.; that's the medicine going in. So it started to go in and I remember telling him I can feel the tingling; all of a sudden I felt the tingling; my face, my neck, my arms; I didn't feel anything in my groin area; and this metallic taste in my mouth. And I remember looking over at the IV bag and I see this red stuff and I'm going, oh my god, I'm putting poison in my body. That was the thought that came to me.
And so I asked him, I need to go to the hairdresser today; are you sure I'm going to lose my hair? And he goes, trust me, you're wasting your money. So when I left there I went directly to a barber and cut off all my hair. And I remember when I went home, my son looked at me and said, mom, what did you do? You look like Uncle Danny; that's my brother. So I got a kick out of that.
And I remember I was sitting at night talking to my sisters and my head started to itch, so I'd be scratching. It turned out as I was scratching the itch, I was kind of like making a road, like in the front of my head. My hair was coming out but I didn't realize how much. So, anyway, by the time I got back home from Boston I remember my hair person saying you have holes all over your head, in your hair. So I went to the kids' bathroom sink and I bent my head over and just went like this and the hair just came out like you were knocking dead leaves off of a plant.
And then radiation started, and that was six weeks, five days a week for six weeks, and as the radiation progressed I got tired'er and tired'er. I remember at times laying in my bed and I felt like my body and the mattress were one.
I wore a prosthesis for nine years, and after nine years I decided I would do reconstruction. I am so glad; it's the best thing I could have done for myself. It is so free'ing. I get up and I dress every day like a regular woman. I don't have to be running around wondering where I put my boob. My daughter used to think that was so gross. I'd say have you seen my boob? I’d forget where I put it; that kind of thing. It's not perfect cause they attempted twice to do a nipple and each time when it healed up it just went flat. Then I was supposed to go back for another time, and I thought to myself leave well enough alone. Let it be.
This year I got my first scare in 17 years. I was on tamoxifen for five years. I was on fermara because it was hormone sensitive. Every year I go in for my mammogram, they also follow it up by an ultrasound. This year for some reason they just did the mammogram and let me go and I was wondering about that. Then a week later they called me back, so of course deja vu, right? They said we saw something; we think you should come back and do an ultrasound. So I asked them, why didn't you do the ultrasound like you usually do; they said because for all these years we were doing a diagnostic mammogram and you came up clear, so for the first time they decided just do a screening mammogram which would not be followed by the ultrasound. So when I went back they did another mammogram, ultrasound, and I'm laying on the ultrasound table, and the nurse says we see something that seems to be solid so we think you should do the biopsy but you can come back or you can do it now. I said do it now. They did it. It was Memorial Day weekend and I had to wait the whole weekend until Tuesday to find out the results. Fortunately, they said it was benign breast tissue, and they think it was because when I had the reconstruction they did some reduction on the other side and that left some scarring and I guess that's what was showing up.
So that was just reminding me that you're not out of the woods; you don't know. So I know that I have to be constantly vigilant and what that helps me do is pay attention to my diet; I go to the gym regularly; I try to take as best care of myself as possible so I never have to go through it again.
And so there are many people, I know especially in the African-American community, who go into denial and think that if they don't see the doctor or if they pretend it's not there it's going to go away. It doesn't happen. African-American woman are caregivers. They're more involved in taking care of other people and putting themselves on the back burner. Because of the history of the black-white issue, there is this distrust of the white community, and many times it's not unfounded because African-Americans have been told by doctors…have been minimized many times by doctors, or they don't have insurance coverage, or they can't see how they can take care of themselves if they're caring for Tom, Dick and Harry…where am I going to get the time for them to take care of me so therefore let's just ignore it.
Even before I had my surgery, I signed up to be in a support group, so as soon as I finished surgery, I knew I had a place to go.
One of the things that helped me in the beginning, when I first got the diagnosis, I thought that the "big C" meant the "big "D", if you know what I mean. And it was very frightening, but people started calling me who had a friend or who knew somebody who had survived, and so as I heard from survivors, that gave me hope.
Through the wellness community, I've been a survivor speaker over the years and also with a class at City of Hope. We published a book called, ‘Writing for Wellness: A Prescription for Healing’ and I have several poems and essays in that book. Everybody that was involved in the class contributed to the book, and the proceeds from the sale of the book go to City of Hope for research. So I'm giving back in that way.
This poem, "Each One Helping Each One", represents what the Cancer Support Community's about because we all come there in a different place, and there are times in the support group when one person is up and the rest of us can rejoice with them. There's a verse in the Bible that says "rejoice with those who rejoice and weep with those who weep." And there are other times when somebody is weeping and we get to surround them and encourage them.
And I wrote this poem called "Each One Helping Each One", and I think it kind of sums up what a support group is about.
We are all dying, this human race
We've each been prescribed a time and place
Living or dying, we each blaze a trail
To those who come after, we each tell a tale
Even my struggles may strengthen another
A few paces behind me, a sister or brother
The knowledge I gain as I fight for my health
When shared with others brings me much wealth
And the sister before me who is losing the fight
Yet still walks with dignity
Gives me insight into how I should live til it's my time to go
Each one helping each one is the best way I know
To deal with life's hardships, to soften its blows
I hope when I'm gone that the trail I have blazed
Will have for some other a smoother path paved