Precious
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Precious has had a “very long experience” with breast cancer. In the late 1980s, she found a lump in her left breast and was diagnosed with Stage 3 breast cancer that had spread to her lymph nodes. Before” she “knew it,” Precious had her “left breast removed.” In addition to the mastectomy, treatment included chemotherapy, radiation, and reconstruction surgery. After several years, “quite frankly” Precious thought she “was done with” breast cancer. Nearly 30 years later, she went to the emergency room because her “breathing was not right” and a chest X-ray revealed that Precious not only had pneumonia, but also Stage 4 breast cancer that had spread to her bones. So, she started her “journey with breast cancer over again.” At the time, she was given two years to live and is now in her fifth year of living with metastatic disease. Treatment has included chemotherapy and immunotherapy, which she is still on. Precious has a considerable family history of cancer; learn more about her experiences with inherited cancer risk here.
When Precious received her metastatic diagnosis, she was working a “lovely job” as a full-time nurse consultant and planned to work through her “full retirement age.” Upon starting chemotherapy, the side effects were overwhelming though, some of which she still manages; she started experiencing “major” fatigue, chronic diarrhea, hair loss, and couldn’t concentrate so ended up having to go on disability. This was a “challenge” for Precious, as she is single, lives alone, and is her “sole source of support,” and was therefore “concerned” about finances. But Precious knew the Lord “had another plan” and “things came together” – she was able to use supplemental insurance and get subsidies to meet her needs during the two-year gap between going on disability and being eligible for Medicare.
Metastatic cancer has caused considerable fatigue for Precious, and even though she is a “high energy person” she now often just needs to do less. A recent PET scan revealed that her cancer has progressed, which has “been a little scary.” She finds solace in asking her church family “for prayer” during these times of uncertainty. Though she looks “fine,” she’s constantly educating people that “doesn’t have anything to do” with “having metastatic breast cancer” – “you can’t look a someone” and assume “they’re not sick.” It does make Precious “sad” that with metastatic disease she will never get to ring the bell to signify finishing treatment. She does try to remember that metastatic disease is not necessarily a death sentence, and that she can still live a “productive life” because “even though you have a terminal disease, that does not mean you have to act like you're dying every day.”
Precious has “never been closed mouth about her disease” and is “very active in advocating for breast cancer.” She uses her time to teach people about the disease and how important it is for people to get mammograms. Precious is motivated by the need for education on breast cancer “because it is affecting Black people at a tremendous rate” and wants to “be a part” of “helping people understand” in hopes they will have “a better outcome” than her family. Precious found she needed to talk “to people – real people” that had metastatic disease and found a “powerful” group run by a Black woman that “was perfect” for her. Being part of a support group has helped her deal with “the maze of metastatic disease.” Precious feels that attitude is a huge part of surviving and, as a “committed Christian,” her faith is key to this. When you have a tragedy in your life, Precious believes you “can become bitter or better,” and she seeks to be better. Precious goes on mission trips “all the time,” volunteers as a disaster nurse, “enjoy[s] dating” and is “looking forward” to getting married one day. She urges people not to give into their disease, to do anything that you can to take control, and “when life gives you lemons” to “just make yourself some delicious lemonade.”
Members of Precious’ treatment team provide good information.
Members of Precious’ treatment team provide good information.
I did not have a lot of knowledge about metastatic breast cancer. And I did not learn a lot until I went to, you know, my oncologist, who's excellent. And you know they gave me, basically, a whole team of people to help me. And they showered me with financial resources because you know applying for disability, I needed help you know with all of these things. And so, they gave me resources about that.
Precious describes a “not good” communication with her surgeon.
Precious describes a “not good” communication with her surgeon.
He was a good surgeon, but his bedside manner and his way of telling me about the breast cancer was not good. And I reacted not in a nice way. He told me--I had someone with me--and he, sat me down. And he had the biopsy. And then, after that, he came and told me that you have breast cancer, and you need to have your breasts removed. And just his whole manner and how he-he presented the whole thing was not nice, and it wasn't in a compassionate way. And I reacted not in a nice way back. And so, he was like, well, don't kill the messenger. And I said, well, the message is not what, you know, what I’m reacting to. I'm reacting to how you're delivering the message. And like I said, it was not in the best of ways.
Precious has experience with several types of insurance and other sources of financial assistance.
Precious has experience with several types of insurance and other sources of financial assistance.
Well, I was eligible, I was on disability. It's just that how, at that time. I don't know if it's changed, but at that time, and because I was under 65, really, I was 62 when I retired. And, and how the rule worked for Medicare is that you have to be on it for two years before you, on disability two years before Medicare kicks in. And so that’s, you know if I was over 65, it wouldn't have been an issue. But I was under that, and so, I had to wait until, but you know. But thank God, I had other insurance to take the place. Because IBRANCE alone is thousands of dollars. And so, I applied for the subsidies through the insurance-drug companies for all my medications and whatnot. So yes, that was the issue of how the rules for Medicare and disability worked.
Precious has learned to deal with changes in her body.
Precious has learned to deal with changes in her body.
But I'm just saying that these are things that, you know, affect you is that you just have to deal with it. You know, you have to deal with the diarrhea. You must deal with the, you know, hair thinning and hair loss and the chronic, chronic fatigue and just rearrange your life to deal with it.
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So, I mean all these are things that are side effects, but you just change your life to deal with the side effects, you know. You just make that lemonade out of lemons, you know. You just change things around to make it effective for you, you know, to give you the quality of life that you're used to.
Precious describes programs that connect and uplift people with metastatic disease.
Precious describes programs that connect and uplift people with metastatic disease.
There’s so many opportunities for people that have metastatic breast cancer. Johns Hopkins has a wonderful retreat that people can go to for a weekend with their caregiver. I tell people about these kinds of things. Casting for Recovery, they flew me- took me, they paid for a weekend for me to learn how to do fly fishing for a weekend. And it's a fun thing for other people that have you know, breast cancer. And they do that regionally. You have to apply for these things, but, you know, you apply, and if you're accepted, it's a wonderful thing. You know, in DC, they have a wonderful organization that gives you a retreat–a very expensive retreat–but if you apply, you're eligible if you have metastatic disease. So, I mean, there are lots and lots of resources for people that have metastatic disease. It's not necessarily a death sentence. And even though you're terminal, you can live life to the fullest.
Precious knows that she will never get to celebrate the end of chemotherapy.
Precious knows that she will never get to celebrate the end of chemotherapy.
There's this nice bell on the outside as you enter into the oncology center on the outside of the building. And the the-tradition is that when you have finished your chemotherapy, you go outside, and you ring this bell. And the nurses and everyone, they celebrate your last day of chemotherapy. And one day, I went outside, and I took a picture next to this bell, and, you know, just because I know the tradition of that bell. And to me, that was not a joyous picture. Because I knew in my mind that I was never going to be able to ring that bell, that I was never going to be able to say I'm finished chemotherapy, I don't have to do it anymore. And even though I took their picture and all like that, that was disheartening to me is to know that with metastatic disease, you're never going to ring the bell.
Precious thought she was done with breast cancer forever, but it returned after many years.
Precious thought she was done with breast cancer forever, but it returned after many years.
I believe it was in the spring of 1989 I developed breast cancer. I discovered it with a lump that I found myself. And before I knew it, I had my left breast removed. I started chemotherapy, radiation-- six months of chemo, then, I think, six weeks of radiation at that time. Then, a year later— almost a year later I had reconstruction surgery. And I lived, at that time, I was Stage three because it had started-it had spread to my lymph nodes. I think two of 21 were positive in my axillary lymph nodes. So, that was my beginning experience with breast cancer. And quite frankly, after five or 10 years, I thought I was done with it. And then, 30 years later, [DATE]of 2014 I went to the emergency room. I was in a pinochle tournament, and I wasn't feeling that well, even though I played. And I said, “I’m not,” you know, “my breathing is not right.” And so, I went to the emergency. I called my doctor, he told me to go to the emergency room. And they discovered that I had pneumonia. Well, when they did the chest X-ray, they also discovered that the breast cancer had spread to my bones. And that's when they notified me. And of course, I went through to the oncologist and whatnot. And they said it, I had stage four metastatic breast cancer at that time.
Precious says to make the most of your life.
Precious says to make the most of your life.
For the person that has metastatic disease, as I said before, I would say again is that live your life to the fullest. Make sure that you have no regrets. Do anything and everything that you want to do. Don't put off for tomorrow what you really can do today. And be gentle with yourself. Make the changes you need to adjust to your side effects. But don't give in to your disease. Try to take control by having friends love on you. And you take the necessary medications, and don't give up too quickly on medications and things that may work for you. Do the acupuncture. Do the meditation. Do the relaxation things. Do anything, do the medical marijuana. Do anything you think is going to help you. Just don't give in or give up to the disease. Don't let it take over your life. You take control and realize that this is one aspect of your life, but it's not your whole life.
Precious wonders, as a single woman, who will be there for her at the end of life.
Precious wonders, as a single woman, who will be there for her at the end of life.
Another aspect is, for me, as a single woman, I have a close family, my sisters and my nieces and nephews. But I deal with, you know I wonder, because I have visited my friends who've had metastatic disease or whatever, and I've visited them in hospice, I wonder, for myself, I struggle with the issue of, who's going to be there for me kind of a thing. Because I don't have a husband or children, I do struggle with that part. Like, if it was just a matter of going to hospice, you know, I dealt with my mother in hospice, so I know the issues related to that. But I was there for her. You know, and so when you, you know, when you have, when you are alone, per se, or you live alone and you are alone with metastatic disease, that’s an issue that you struggle with is the issue of who is going to be there for you when you have to be at that end stage. My friends that have had metastatic, they had a husband or children or something like that. And that's who dealt with them for their arrangements and all like that. Now, I have a last will and testament. I have the Five Wishes. I have a will. I have all these things. I have people in place that will do all this. But I'm talking about, you know, when you're there in that bed in hospice, you know, who do I look up to see?
Precious is amused by questions men asked about cancer and was waiting for the right new “special friend.”
Precious is amused by questions men asked about cancer and was waiting for the right new “special friend.”
I'm single and not married and would love to get married. So, I was hesitant about sharing it in the dating community. But you know, it's very interesting what men think about breast cancer, especially metastatic breast cancer. For instance, recently, you know, I went on a date. And it was very interesting because he didn't know a lot about breast cancer and didn't know anything about metastatic breast cancer. And, people, you know, think it was, I've even been asked, well, “can you have sex now that you have metastatic breast cancer?” And quite frankly, I believe sex is for marriage. So, I mean, it's a non-issue for me at this point in time. But yeah, I said, “yeah, I can have a special friend if I wanted to. But I'm not sure if I want you to be my special friend.” But the point is yes, everything works, even though I have metastatic breast cancer. And so, I just thought that was kind of amusing that, you know, men wanted to know, you know, “can you have sex now that you have,” and so yes, you can have sex. And you can have good sex. I'm trying, to have good sex, but I'm waiting for the right person at the right time. And, you know, quite frankly, I used to date online. And so, I was thinking about dating online again. And it's funny because they even have dating sites for people with cancer that want to date other people with cancer. And I'm like, I don't think I want to go there with that, but at least it's available if I choose to.
Precious wonders who will be there for her at the end.
Precious wonders who will be there for her at the end.
Another aspect is, for me, as a single woman, I have a close family, my sisters and my nieces and nephews. But I deal with, you know I wonder, because I have visited my friends who've had metastatic disease or whatever, and I've visited them in hospice, I wonder, for myself, I struggle with the issue of, who's going to be there for me kind of a thing. Because I don't have a husband or children, I do struggle with that part. Like, if it was just a matter of going to hospice, you know, I dealt with my mother in hospice, so I know the issues related to that. But I was there for her. You know, and so when you, you know, when you have, when you are alone, per se, or you live alone and you are alone with metastatic disease, that’s an issue that you struggle with is the issue of who is going to be there for you when you have to be at that end stage. My friends that have had metastatic, they had a husband or children or something like that. And that's who dealt with them for their arrangements and all like that. Now, I have a last will and testament. I have the Five Wishes. I have a will. I have all these things. I have people in place that will do all this. But I'm talking about, you know, when you're there in that bed in hospice, you know, who do I look up to see? And that's what I struggle with. Even though I'm close with my church family, my regular family, all like that, you know, that's what you struggle with. I'm close with my God. And so, I know that, ultimately, He's going to take care of that. But humanly, you wonder, you know, you deal with the loneliness of that final hour, those final times.
Precious has made plans for her death.
Precious has made plans for her death.
I've decided to-to cremate my body while I'm living. I filled out the form and with the, with the [LOCATION] Anatomy Board. And if you fill out the form while you're living, then the cremation cost is on the state of [LOCATION] and not on your family. And so, and you carry a card with you at all times that said, you know, “call [LOCATION] Anatomy Board.” They’ll pick my body up. They'll use whatever for a year. And then, after a year, your ashes will be delivered to your family member that you designate. But the cost of cremation and all of that will be the burden of the state of [LOCATION] while they're using your body, you know what I'm saying? And so that's also something I shared. And other people have taken advantage of that, as well, so that the family is not burdened with your, you know, costs of cremation and all that. Because that can be expensive.
Precious wants to live but has accepted the possibility she may die.
Precious wants to live but has accepted the possibility she may die.
The bible says, well, Paul says, “For me to live is Christ. To die is gain.” Now, I'm not too happy about the dying part. But to me, to live is Christ. But if He chooses to say, “Look, you know, I can get more glory out of you dying,” then that's okay, too. But at this point, I'm hoping that He says, you know, “Go ahead, child, live and glorify me in your living.”
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I personally think I can give Him more glory that way. But, you know, if he wants to lay me down in hospice, I'll just make sure I'm cute in the bed, you know.
Precious feels lucky to have come across a group focused on metastatic disease run by a Black woman.
Precious feels lucky to have come across a group focused on metastatic disease run by a Black woman.
Well, one thing, it's just funny how things happen. I was just reading a neighborhood paper. and in the paper, there was a person who had a big article talking about metastatic breast cancer. And she was a part of an organization called [organization]. And I read her contact information in the article, contacted her at that time and, ‘cause I knew, really, nothing about metastatic, even though I went to the doctor by that time, and, you know I was learning. But I needed support and talk to people--real people--that already had it. And she was like perfect for me--a black woman, beautiful black woman. In any case, I contacted her. She told me about [organization]. She picked me up and took me to my first [organization] meeting. And for those that don't know, [organization] is an organization specific-, targeting people they have metastatic breast cancer. And it advocates and supports people that have meta--and we have a meeting once a month or, in any case, we meet regularly in [LOCATION] and-and other places, we meet as a group. It’s not a large group, but it's a very powerful group in terms of educating people-, other people that have metastatic breast disease. And they, of course, do research on metastatic breast cancer. They have a bus that goes around, you know and advocates for
Precious learned to advocate for herself by going to meetings with other people who have breast cancer.
Precious learned to advocate for herself by going to meetings with other people who have breast cancer.
For instance, when I talk to other people at the meetings and I hear what they're saying and what they're asking their providers, that help me to know what to ask my provider. And that's helped me, as well. Because even though my provider is excellent, I have to kinda advocate for myself. And I said, don't you think it's time for me to have this test or that test, or don't you think we need to try this or that? And that has helped me. Because he wasn’t, you now, for instance, my PET scans. That's why I started having them more regularly. And that's when they started seeing the progression. And so, I'm on top of that because [organization] has helped me to advocate for myself when I go to the doctor and be more aggressive in being a part of my care. and so, I am forever indebted to organizations like [organization].
Precious describes the benefits of support groups.
Precious describes the benefits of support groups.
I would just encourage anyone dealing with metastatic disease to be a part of, for instance, METAvivor. Get the support that you may want or need through organizations like that. And ask for resources. That-If you don't have access to enough resources, ask for more. I, personally, am not one to go on the internet and do a whole lot of research. But I'd rather have people tell me stuff. And so, you know, that's why I go to the support groups. Because once you're there, then they usually have all this information already gathered. And it just helps you to just be there, and they can support you in what you need to know about financial help, all kinds of help. So, I personally encourage everyone to be a part of a support group--at least one.
Precious dislikes being told she looks good despite having metastatic cancer.
Precious dislikes being told she looks good despite having metastatic cancer.
One message I would give, I guess, if there was such a thing as a general public, I would say, please don't say to a person with metastatic disease, ""You look so good." Or “But you look so good.” I don't like hearing that from anybody. because it negates the fact that I do have the disease and that I'm living with it. So, I prefer not to share-give information--like, you know, I would share with someone, “I'm there for you. “I would say things like that, like “I'm there for you if you need to just talk sometime, or you know, you want to go somewhere or do something that has nothing to do with your illness, just call me and let me know. I'll be glad to be there for you."
Precious suggests clinicians adapt their communication style for each patient.
Precious suggests clinicians adapt their communication style for each patient.
Be gentle. Be informative but let them take the pace. For instance, when I go to the dentist, I don't want them to tell me every detail of what they're getting ready to do to me. But that's me. Some people want every little detail about that. So, you just have to learn your patients and let them guide you into what they want to know or don't want to know about their medical condition.