Stories

Adelle

Adelle, a mother and professional woman in her 40’s, has had several primary cancers since the age of 25, coupled with other chronic health problems that have forced her to alter her career choices, adjust her lifestyle, and re-evaluate her relationship with her family.

When I was 25, I felt like I was on top of the world. I was starting fresh after a divorce and felt empowered, had a good paying job and was taking care of my daughter. Having grown up poor, I was always ambitious, and I worked hard to be successful and give back to my family. Then, I was diagnosed with cervical cancer. I was in disbelief and overwhelmed. It was aggressive and things got worse quickly. I had multiple surgeries over the next three years, coupled with rounds of radiation and chemotherapy and was so ill at one point, I was hospitalized for more than 50 days. That was tough—I couldn’t see my daughter, was down to less than 100 pounds and wasting away from toxicity. I finally discharged myself and decided to go home to die.

I had to move back in with my mother, which was very traumatic for me, my family and my young daughter. After stopping chemotherapy, I tried all sorts of alternative treatments and eventually regained my strength. I still had a tumor but was strong enough to undergo additional surgery, a partial hysterectomy at age 28. After that, I had more chemotherapy, which left me barren. Two years later my health was good enough to return to work and try to rebuild my life. It was miraculous that I had survived. 

A Second Chapter

Ten years later, I had regained my professional footing and independence. I had a very demanding job at a New York City agency that reported directly to the Deputy Mayor. I worked a lot of hours and probably didn’t take care of myself properly and hadn’t been going to regular well-woman appointments, feeling confident that my cancer was “behind” me. In the summer of 2010, my mom was visiting to get medical care for what they thought might be uterine cancer and I took a leave of absence to care for her. While I was taking care of her, I finally made it to the doctor for myself and found out I had ovarian cancer.

At 40 years old, I had both ovaries removed and did six months of chemo, which was difficult. I lost a lot of weight again due to the side effects, and was put into an early menopause. During this same period, I also learned I had systemic lupus. It took a year, but after treatment finished, I went back to work. 

One day I ended up in the emergency room with severe pain in my abdomen. It was an issue with my gallbladder, and it had to be removed. However, a CT scan also showed a tumor on my right kidney, a diagnosis of renal cancer, which was a third primary cancer. I knew something was very wrong and decided to get genetic testing, which confirmed a mutation that makes me more likely than others todevelop cancer.  As I reflected, I realized that so many in my family had developed cancer and we all probably had this DNA issue to some degree.

Life-Changing Surgery

After surgery on my kidney, I developed complications and was on temporary dialysis. Lupus also gave me problems during the recovery. Then, in 2012 they discovered a lesion in my lower sigmoid colon, and I needed yet another surgery to remove portions of my colon. After the bowel surgery I continued to have issues and obstructions. It turned out that the radiation for my first cancer had caused atrophy of my colon and it just wasn’t working as it should any more. I wound up with a permanent colostomy. This has had the most profound change on me physically, mentally and emotionally. It’s difficult to manage because of unforeseen complications and it’s visual—a constant reminder.

In 2014, I officially stopped working and left my job, a big change for me. I loved being the family problem solver, the breadwinner. When that had to change it bought out feelings I wasn’t prepared for. I felt like my resourcefulness and value diminished and my family didn’t look at me the same way anymore. Working and contributing was a big part of my identity.

Rinse and Repeat

For the last several years I’ve had a major surgery almost every single year, struggle with managing my lupus flares and last year I had Bell’s Palsy. Recently, they found a lesion on my brain, which turned out to be benign artifact, but it’s been one thing after another. I’ve been in a constant state of poor health. My challenges are still significant, and I haven’t found a way to feel close to where I was before, physically, mentally or emotionally.

It’s very difficult to redefine my life and who I am today. I have had to accept that I will likely develop another cancer even though I have a lot of confidence in my team at Sloan Kettering. The goal now is to catch things early with intense monitoring and imaging. Financial hardships prevail as not working has had a huge financial impact, I’m on a third of my former salary but have expenses with medication and my copays.

Family Matters

My husband and I are in a caretaker/patient relationship. After my second cancer diagnosis he had a relationship with another woman, which broke my heart—it was the ultimate betrayal—I felt abandoned and it’s made problems in our relationship; but he feels like he can’t leave because I need so much help. He’s apologized and we’ve gone to counseling, he said he is committed but he wasn’t strong enough to be there for me then. My self-esteem suffers greatly with the colostomy, surgery scars and my poor health. I have self-image issues, don’t feel sexy and I don’t feel like I can trust my partner. We have a routine and he’s still here with me but I’m not sure what’s going to happen, which is very scary for me. 

My daughter has been through a lot with me being sick; to this day she still has emotional issues because of it. We’re very close now, but I wasn’t always able to care for her when she was younger, and she internalized everything. When I got sick and she was in college, she barely came to see me. I think she was expressing her anger and was afraid of so much unknown. I got her into counseling at the hospital, which helped her a great deal. She hasn’t gotten any cancers and doesn’t have the same gene mutation that I have, but she does have an auto-immune condition, so I encourage her to get screened every year and be pro-active about her health.

Building Back

My family is sympathetic and kind and deep down, I know they love me. But I’ve had to accept that I do not have a strong emotional base at home. It’s just not who they are, not even my mom. I’ve had to find emotional support elsewhere, with a good friend who I can talk to and cry with or at times with my therapist. My therapist has encouraged me to rebuild my sense of self. I’ve gone through depression and still struggle with it at times.  

Three years ago, I might have worked myself into a breakdown over all of the what-if’s. Today, I’m proud to say that I’m not in that place now. I’ve found some bright spots. I grew up Catholic but wasn’t active for a long time. I’ve reconnected with that, and it gives me strength now. God won’t send me more than I can bear. I have faith, and lately I’ve started believing in me again. I am smart and brave, but I didn’t give myself credit these last few years. But now I feel strong, like whatever comes my way, I’m going to be okay and figure it out. God is going to be there for me.  

My priorities now are my family, my daughter and my marriage. I’m not in full remission yet but there’s no active cancer. I reached the five-year mark in March of 2018 and I feel more empowered than ever. Even if they tell me I’ve got six months, I’m at a place where I can handle it. I’ve found some peace.

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