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Managing Your Own Care, Expectations, and Sense of Self

Three-time cancer survivor Jasmine makes peace by accepting what’s temporary and persevering through major life changes.

Interviewer: The way you talk about your experience and your life is inspirational and amazing. I would love to hear how you do it and how you keep yourself up. You are a three-time cancer survivor. How do you stay you?

Jasmine: There are two parts of me: one that goes with the flow, but that part is new. The other part of me worries about everything. I have anxiety about every single detail of life. I used to work in hospitality doing events, and I’m obsessed with details. I used to want to plan and control every part of my life. 

And then, when I was diagnosed with cancer the first time, I adopted an attitude of: "It is what it is." Now when I wake up in the morning, I try to make it an it-is-what-it-is day. And 80% of the time I can.

There is not a whole lot I can do to change my daily life, but I can maintain my sense of, "Well, okay. Now what?" In my career I have trained and managed thousands of people. And so, I have incorporated that order with my treatments.

Interviewer: When you are naturally focused on the details and can facilitate things running smoothly, that’s a skill. Translating that into your medical care must give you a comforting sense of control. 

Jasmine: Yes! I managed my care. I was very proactive. I talked. I asked questions. And I warned them all, ‘I am going to ask you the questions that probably others won't ask you. But I am asking for my best interest.’

Interviewer: That’s not an easy thing to do, especially when you have so many appointments and your livelihood is at stake. Well done.

Jasmine: I would ask my doctors questions like, ‘Did you get enough sleep last night?’ because I wanted my care team sharp and rested. I have cancer but I also have Type 1 diabetes, so it is very important that everyone is really careful.

Asking questions and managing my care and team is a key thing keeping me sane. Now, it doesn't always go my way, and I don't necessarily get exactly what I want, but I at least understand what’s happening.

Interviewer: I think a lot about control and how our perception of what we can, as you say,- manage, changes the overall experience. 

With many things, you kind of get the hand that you are dealt. Like having Type 1 diabetes, or having a hereditary cancer risk, or little everyday things. And from my experience, having some control makes you feel better. I regularly stop myself before reacting to something that’s going on with my health or kids or work and think, ‘Okay. This is what I know I can do even though all of these other things are unknown.’ I find comfort in that.

Jasmine: For me, managing was a way to survive, a way to get through. There were certain things that I knew I didn't have control over. I didn't have control over if I woke up one morning and my sugars were super high and then how much time it takes to get things back in line. But what I do have control over is exactly what I’m going to eat or not eat.

There are constant one-step-at-a-time things that I have to get through and manage, or take control where I can.

Interviewer: It can be an overwhelming amount of things to manage, especially with multiple health concerns and how much they’re interconnected. 

Jasmine: Correct. And I’ve had so many years of dealing with medical issues. My husband was diagnosed with Stage IV terminal cancer in 2012, and I was diagnosed with breast cancer in 2014. When I was diagnosed, I didn’t know how much more I could take. 

Things became so physically and emotionally intense. For me, having a double mastectomy was mortifying. I’d felt like as a woman I was supposed to have certain things, breasts, nice hair. And I say nice hair because my father is African American. Hair is a big deal in our culture. 

Mastectomy and chemo were a big identity hit. Who was I going to be once I lost my breasts and my hair? What does that look like? Being an event planner, I planned all the details of my surgery, time off, and my husband’s chemo, which I had to schedule around. 

Interviewer: I’m getting overwhelmed just imagining how difficult that must have been. When that was all happening at once, were you still able to ask all your questions and advocate for yourself?

Jasmine: A lot of times with these diagnoses, people's lives and worlds are just sent into a spiral of chaos and we can't get things to line up or can't get things to make sense. I had to ask questions to get out of that spiral.

I think that as women, it feels like we have to trust everything a doctor or someone medically certified says. They are trained. They know a lot more about cancer than I do, but I had to ask questions.

One of my greatest accomplishments doesn't even have to do with my treatment. It had to do with my husband's treatment. When Jonathon got diagnosed, they told us his esophagus was 40% covered with tumors and that he wasn’t going to live beyond three months. He was only 39 years old and I just couldn’t accept that. 

I started doing research and found that Dana-Farber in Boston was doing research that could help him. And, when I got them on the phone, the doctor said he didn’t have a cure, but he believed he could give Jonathan more time. That was all I was asking for. More time. And, we got three more years together. 

Interviewer: What an amazing thing to do. I think was really smart to find the people doing research. Those are the people who are asking new questions. They want to completely disrupt and improve the path of care. But, then you have to be willing to try something new.  

Jasmine: I can say this because I have been through it. When you get diagnosed, you wonder ‘What about my kids? What about my grandkids? What about this trip I wanted to take? What about the things I wanted to do on a Bucket List?’ But what I tried to do in the moment of diagnosis was asking the questions about the path forward. 

Interviewer: And how did those questions change your care? 

Jasmine: One of the second-most important things that I worked hard to avoid is what I call the "train wreck of medications." The engine is the chemo. And then you have the train car of medication to help deal with depression that comes along with having cancer.  Well, now you've got the another car, which is the medication to help you sleep, because the anti-depression causes insomnia. And then acid reflux medication, which gives me nausea. And, it keeps going.

It’s a train ready to derail. One of the things that I asked was for my meds to be as limited as possible. I don't want to be taking a medication to cure a side effect. I want to be taking a medication because it is taking care of the cancer. And only that, whenever possible.

Sometimes I had to manage my symptoms and take medication for the side effects, but not every day. There is a very careful balance. And again, the things that I am saying worked for me.

Interviewer: You are an amazing self-advocate. What is right for you is maybe different from what is right for someone else. I think a lot of people don't feel like they can ask for something different.

Jasmine: I spoke to five different doctors before deciding on my chemo treatment. I asked each of them the same questions. ‘Am I gonna lose my hair? Am I gonna develop any type of side effects that will be debilitating?’ Oxaliplatin, the recommended chemo, has a very harsh neuropathy side effect. I need my toes and I need my fingers. And I have Type 1 diabetes, so I already am very, very susceptible to having neuropathy in my fingers and toes.

I talked and talked and then finally the last oncologist was willing to take another look at the biopsy and find another drug combination.

I think that we lose that perspective with the medical field because we are so dependent on them making us better that we forget that these doctors, nurses, and specialists work for us.

Interviewer: That is a good way to put it.

Jasmine: We are not necessarily at their mercy to do whatever they say. They know you are a test result. They know you are a cancer patient. They know you are a woman. But they don't always know where you’re at emotionally. I went with the fifth oncologist because she was willing to figure out a treatment that suited me, she also asked how I was mentally.  She was the first doctor to participate in my care the way I needed in order to be successful.

Interviewer: That feeling of being cared for in a holistic way really matters. It affects your psyche and your emotional state. And that impacts how you heal and how you experience things. I’m so glad you found a doctor that was the right fit. 

Jasmine: Cancer is a total body thing. And so I need a doctor who feels that way. Like I said, they don't have to agree with me. They don't have to make the same recommendations that I want. And they don't have to give me whatever I ask for. But I need them to think about my whole person.

Interviewer: Speaking of your whole person, I know you decided not to get reconstruction. You stayed flat. Is that correct? I would love to hear about that choice and how you feel about it now.

Jasmine: My foremost concern is always my diabetes. As a diabetic, I don't recover as quickly. 

Also, because I am half African American, I scar differently. I get keloids. The doctor made one incision all the way across my chest for the mastectomy, which is what I wanted. And, she explained that I’d get "dog ears," which are the little flaps near my underarms, because I am heavy. I had a second surgery to remove those. I was happier with only having two surgeries and fewer complications.

Another thing that factored into the choice is that I naturally had very large breasts. I was excited about not having to wear a 2X shirt to accommodate my boobs.

Those physical things were on my A list. My B list had to do more with my emotional state.

Interviewer: Of course, as you said before, having no breasts and changing how you perceive your womanhood had a big emotional impact. 

Jasmine: Yes, when I was talking with my doctor, she was really honest about how difficult it might be staying flat. She tried to prepare me by reminding me that clothes won't fit the way that they should, because they are made for women with breasts. She encouraged me to think about getting prosthesis. Since I don't have breasts and my belly is predominant, people will think that I’m pregnant or a man.  And she warned me that some people might mistake me for a drag queen. 

And then, it happened. Christmas of 2014. I was at one of my hotels—I wear skirts and dresses to work—and I had a gentleman mistakenly say, ‘Well, thank you, sir.’

I've had people ask me when the baby was due. Because when you don't have breasts or have prosthesis in, your stomach is very predominant. 

In the beginning, those comments hurt and I wondered if I should have gotten breasts. I have tried prosthesis, but it wasn’t for me. Having prosthesis wasn’t comfortable. I’d walk around thinking they might fall out, or if they were straight, or set too wide or too close? I just don’t worry about it now.

About six months after my breast cancer, I got diagnosed with uterine cancer and had a hysterectomy. That led into a whole other crisis about losing the last of my woman parts.

Having no breasts, or ovaries, or hair or uterus. It is difficult. 

Interviewer: You have been on quite a journey, Jasmine. Your voice is full of strength and positivity. How are you feeling now? 

Jasmine: I have been diagnosed three times with cancer. Right now I am still undergoing treatment. I feel OK. I am having typical cancer treatment side effects. I feel more comfortable this time. I know how to interact with my medical team, and I accept that certain physical things are going to change. 

I had to have a colostomy bag put in. I know now how to accept temporary things. This is temporary. It is not permanent. 

I feel like I have a cancer maturity, I know how to manage things. Cancer is a part of me. And

I am learning to accept that. To live with it.

Interviewer: You are doing a really amazing job negotiating all of this. How is it going for your family and the people in your life?

Jasmine: There were moments where people are uncomfortable because they didn't know how to relay their feelings to me, their care, their concern. They didn't know how to compliment me. But, they’re figuring it out. My staff will say things like: ‘Oh, Jasmine, I love the new color wig that you have today.’ Or, ‘Oh, I love that new cut.’  I have given them a tool to be able to communicate with me, where they couldn't or didn't know how to without my wearing a wig. 

Interviewer: You are doing two things that I think are so important and also really difficult. As the patient, you are managing the feelings of the people around you and giving them the tools they need to be okay, too.

Jasmine: Correct. It's exhausting. I feel a bit like I am the person who is sick and struggling and that they should be able to figure this out.

Interviewer: But rarely that is the case, right? We have to give people, our caregivers, our coworkers, our friends, our people, our team, something to help them feel comfortable. So you don't lose them. Because in that discomfort I think there is a lot of fear. They are afraid that they are going to offend you, or hurt your feelings, or whatever. But that is not an easy job.

Jasmine: Yeah. It is hard. 

Interviewer: And the other thing you are doing, that I also want to commend you on, is the understanding that everything is temporary.

Jasmine: Yes. Having a bag is absolutely brutal.

Interviewer: Knowing and understanding that things like that are temporary is such an important lesson. Because you can also apply that to things that are happy, where you can gain an appreciation of anything. 

Jasmine: Yes. I understand new things about myself and my ability to persevere. And in all honesty, it actually empowers you as a person living with cancer. It empowers you in the fact that you do have control over some things. You will get control over some things. You just need to find the right path for you to get there. kristen carbone Brilliantly mastectomy

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