Being Your Own Advocate
- 36-year-old Alexandra Cummings thought her mental fog and low-grade fevers were just the outcome of stress and an overtaxing work life juggling two jobs. But when symptoms progressed after developing a blood clot in her leg, she knew she had to get to the bottom of what was going on.
- After getting a full blood panel done, Cummings found out she had acute lymphoblastic leukemia, a rare type of blood cancer. As she awaits more direction on her treatment plan, the Albany, New York native is busying herself by sharing her experience on social media, which has been a lifesaver for her.
- Some people diagnosed with cancer or other disease are open to sharing their experiences as much as they can, while others prefer to keep it to themselves or close loved ones. SurvivorNet experts say both approaches and everything in between, are valid.
- Being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to get an accurate diagnosis – with the proper treatment plan that’s right for you and your condition.
“I went to urgent care for the pain in my leg, which got so bad that I was unable to walk,” the Albany, New York native recalled to Newsweek. “They didn’t give a reason and didn’t run a blood panel; they simply diagnosed it as a blood clot and advised me to follow up with my primary care doctor.”
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Receiving Her Diagnosis
Cummings’ boyfriend Jesse, after seeing her health continue to get worse, said he was taking her to the emergency room. A full blood panel showed that she had a high white blood cell count. Cummings had leukemia, the specific type being acute lymphoblastic leukemia.
A full blood panel was done, and within hours, Cummings learned that the situation was far worse than she imagined. She was told that she had an incredibly high white blood cell count and there was likely only one thing it could be: leukemia.
The diagnosis weighed on her more than most, as Cummings lost her mother to cancer and cared for her up until her death in 2019. “The most intense feeling I had was worry,” she said, asking herself if her fate was to be the same.
“How was I going to tell my friends and family this horrible news?”
Cummings, since her diagnosis, has found TikTok to be an “incredible outlet” for her to share her experiences — and in turn, help others going through similar challenges.
@sagegalexy
“The majority of the reactions have been positive and encouraging,” she said. “I love hearing from others who have gone through chemo and I get so many comments from people saying they’re praying for me and wishing me well, which is remarkable.”
“Not only do I get to share my perspective, but I also get to demonstrate how one can go through difficulty without killing their spirit.”
Cummings spent 28 days in the hospital after beginning chemotherapy treatment, which also included spinal chemotherapy — and eight lumbar punctures. A lumbar puncture, also known as a spinal tap, according to Cleveland Clinic, is a diagnostic procedure where a healthcare provider removes cerebrospinal fluid from your spine.
“When I was first diagnosed, my bone marrow was 97 percent cancer. As of the end of cycle 1 part A,” she explained her bone marrow “was down to 1-2 percent.”
Now she is waiting to see if she will need a stem cell transplant, which is also called a bone marrow transplant. In the meantime, Cummings is stressing the importance of being proactive about your health.
“I felt like I was in the prime of my life and enjoying the fruits of all that I had worked for: a happy relationship, a fulfilling career, financial security, and a positive future. No one wants to think there’s something wrong, especially when otherwise happy and healthy,” Cummings said, urging people to “stay on top of their health, pay attention to how they feel, and be upfront with loved ones about any new or changing symptoms.”
Learning More About Acute Lymphoblastic Leukemia (ALL)
Being diagnosed with acute lymphoblastic leukemia (ALL) can be emotionally overwhelming.
Patients and their loved ones will typically have many questions about the disease and how it will affect them. Dr. Olalekan Oluwole, a hematologist with Vanderbilt University Medical Center, spoke with SurvivorNet in a previous interview to answer some of the most frequent questions people have after an ALL diagnosis.
What Is Acute Lymphoblastic Leukemia (ALL)?
Dr. Oluwole says many times people worry that they might pass the disease on to other family members and wonder how they got it in the first place. He explained that in most causes it’s a quiet mutation that causes the leukemia.
“It is often not something that is heritable,” Dr. Oluwole told SurvivorNet. “If there happens to be a pattern in a certain family, many times that may be maybe because they were in the same environment. ‘I got exposed to the same thing, right?’ So it is not necessarily something that is heritable or like some of the other cancers, some of the other genes that we know about things like breast cancer. ALL is not like that.”
He said another question he hears frequently is what if people do nothing after a diagnosis.
“The ALL grows very, very fast. If we don’t do anything, it will cause somebody to die within a few weeks,” Dr. Oluwole said, stressing the importance of immediate care.
All About Acute Lymphoblastic Leukemia (ALL) — The Most Common Questions About the Disease
He says many times the leukemia is rested in the bone marrow, and because it is an abnormal growth, it just keeps dividing.
“It doesn’t follow rules, and it doesn’t stop,” Dr. Oluwole continued. “Not only that, because this is part of the immune system, the immune system is sorta like the police of the body. So those abnormal cells that have now become cancer, they have the ability to go to many places. They go into the blood, and they often go into the tissue or the lining around the brain.”
“By the time somebody comes to us and they have ALL we already assume that it has gone everywhere in the body, and we have to treat them like that,” Dr. Oluwole says.
He says many patients present with fever or infections because the bone marrow has “failed in its ability to make other types of blood cells.”
As for support after such a life-changing diagnosis, he says there are trained professionals such as have case managers and hospital navigators exist to aid people through their cancer journeys.
“Cancer is a really life-changing diagnosis and we would like our patients to know they don’t have to feel as if they are on their own.”
Sharing Your Diagnosis
Some people diagnosed with cancer or other disease are open to sharing their experiences as much as they can, while others prefer to keep it to themselves or close loved ones. SurvivorNet experts say both approaches and everything in between, are valid.
RELATED: Check Out SurvivorNet’s Resources on Mental Health
WATCH: Discussing Your Diagnosis
“Patients who have just been diagnosed with cancer sometimes wonder how they are going to handle the diagnosis of the cancer in social situations,” psychiatrist Dr. Lori Plutchik explained in a previous interview.
Questions like “How much information should they share and with whom should they share the information?” are things Plutchik says patients take into consideration.
“There is no one right way to handle this diagnosis. People should do what feels right to them.”
A cancer journey can last months to years, which means cancer warriors may be experiencing a lot of uncertainty until they fully understand where their health stands. This uncertainty can influence when a cancer patient is ready to share their diagnosis, Dr. Plutchik further explained.
Dr. Plutchik also stressed that those close to a person going through cancer should be respectful of their wishes when it comes to disclosing their diagnosis and seeking support.
Leading Experts Urge People To Be Proactive
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment for an ailment, and advances in medicine are always creating new options. Also, in some instances the specific course of treatment is not clear cut.
That’s even more reason why understanding the potential approaches to your disease is crucial.
Furthermore, getting another opinion may also help you avoid doctor biases. For example, when seeking care for cancer, some surgeons may have an affiliation with a radiation center.
Cancer Research Legend Urges Patients to Get Multiple Opinions
“So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, previously told SurvivorNet.
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of disease
- You have a rare disease
- There are several ways to treat your illness
- You feel like your doctor isn’t listening to you, or isn’t giving you good advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
- Your insurance company wants you to get another medical opinion
Bottom line, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to get an accurate diagnosis, with the proper treatment plan that’s right for you and your condition.
Contributing: SurvivorNet Staff
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