Cancer

“It’s best to institutionalize her. She has no rehabilitative potential.” This is what a neurologist told my parents 47 years ago after I’d failed to meet developmental milestones related to movement. I was then diagnosed with cerebral palsy (CP). My parents found me a different doctor, a doctor who recognized my full potential — which changed the trajectory of my life. CP stems from a developmental brain injury that has gifted me with garbled speech, an “abnormal” gait, and reduced fine motor skills. My disability is obvious to people when they meet me. They may not know what “CP” is, but they know there’s something up with me. Often, they assume I am neither intelligent nor capable. Growing up, school was a great opportunity for my intellectual growth — and for teaching me how to live with an obvious disability. Particularly during school transitions – like starting at a new elementary school and then moving on to middle and high schools – I learned the importance of educating others about my cerebral palsy. Education was the key to acceptance. My mom would come visit my class after I’d moved to a new school. We would tell the story of my life with CP: the multiple muscle and bone surgeries I’ve had to straighten my legs, the frustration of not being able to speak clearly, and the reality that I wasn’t much different than other kids. Each time we offered one of these educational visits, my life at school rapidly improved. Kids stopped teasing me. I made more friends and felt less lonely. People simply got it. I became more outgoing and more involved in school activities. My everyday life with cerebral palsy is quite ordinary. I take out the trash. I do laundry. I sleep late on weekends. To me, my body is normal and my life is normal. My speech sounds perfectly clear in my head. I’ve built a life of convincing people that my visible and audible “impairments” do not affect my intellect, my potential, or my freedom. This simple fact seems to mesmerize many folks. I went to college and then graduate school — usually as the only student in class with an obvious physical disability. I earned a doctoral degree in neurophysiology – the study of how the brain works. Now, I run a research laboratory at an Ivy League institution in New York. The goal of my lab is to develop innovative interventions to help people with cerebral palsy optimize their fine motor skills. My many wonderful colleagues and I have made substantial gains in understanding how the brain controls movement in people with CP — from which we can build more effective interventions. Not only do I strive to help kids improve their movement, but I also hope to show them and their families that they can live happy, exciting lives. I want kids with disabilities to know that even if society judges them for their visible disabilities, they may derive abundant joy from proving people wrong. In July of 2018, though, I had a sudden bout of severe back pain. After a couple months of inconclusive medical testing, I was diagnosed with metastatic breast cancer (MBC). Before a tumor was visible on a mammogram, breast cancer cells had found a home in my spine. As a friend with MBC characterizes this diagnosis, “Do not pass go; do not collect $200.” Now what? While early stages of breast cancer are curable, MBC is terminal. As my wonderful oncologist described it, once cancer cells metastasize beyond the breast, we MBC patients have “cancer dust” forever circulating through our bodies. Eventually, these “dust bunnies” claim eminent domain over our organs. Therefore, we often must be on strong treatments for the rest of our lives. The average longevity of a person with MBC is about two to three years — although many live longer. I’m lucky that I’ve already beaten the odds. MBC treatments do not cause some of the stereotypical chemotherapy side effects. I haven’t lost all of my hair, and I haven’t lost weight. MBC isn’t throwing me any bones, though. My MBC is mostly invisible from my appearance, but I struggle with joint pain, nausea, and fatigue — and there are so many more symptoms I have. After one treatment, I lost my fingerprints. My medications make it even more difficult to speak clearly, which further isolates me when there’s so much I want to say. I’m now in a world that contradicts the lessons of my life with cerebral palsy. It’s quite the conundrum. I’ve spent my life proving to people that my disability does not affect my intellect or potential — which is true of my CP — but MBC is an invisible, terminal condition that affects multiple aspects of my life. Christine Miserandino popularized the “spoon theory” of life with chronic illness in which energy is represented by “spoons.” Let’s say that a healthy person has 30 spoons of energy per day. Dressing and showering may take two spoons, a workday may take ten spoons, and so on. People with health challenges, though, might only have 10 spoons per day. We may often have to make careful choices about how we use our “spoons.” If going to a doctor’s appointment takes five spoons, then we have to figure out how to accomplish the rest of our day with only five spoons left. I’ve tried to use my favorite childhood tool — education — to improve my relationships while living with MBC. I’ve educated people about what my diagnosis means, my prognosis, my treatment plan, and my needs. However, some don’t believe it, and they’ll say, “You look fine!” Living with MBC can be isolating, but I’ve now spent more than half my diagnosis in a pandemic, which exacerbates the loneliness. In my work, I continue to write grants for projects I likely won’t live to complete. I feel driven to make as big an impact as possible in the world knowing that my window of opportunity could close at any moment. I want to be remembered as the “cool aunt” by my nephews and nieces, though I’m their only aunt who doesn’t have a dog. It may be a hard sell. I’ve maintained an active life after my MBC diagnosis. Nearly a year into my diagnosis, I earned my black belt in taekwondo. Still, MBC is a beast. When my MBC is visible to others, it is awkward – I think it’s a reminder of my mortality. I’ve lost several meaningful friendships with people who say they can’t bear a “front row view” to my struggles. I get it, but it stings knowing that their discomfort overrides their value of my friendship. With both CP and MBC, one thing I’ve always known is that my true friends are the real deal. Their love, acceptance, and good humor keep me afloat. Here I am, needing folks to understand the severity of my MBC diagnosis after spending a lifetime teaching people that my CP does not affect my abilities. This health challenge has gifted me with several lessons. Talking about health conditions should not be taboo. Whether a person has a visible or an invisible health condition, listen to them. Everyone is likely living with struggles of some sort. Acknowledging our needs, our talents, and our mortality gives us all space to live authentically. We all deserve this sacred gift.

You may have seen pain charts, sleepiness scales, and maybe even a fatigue scale. My virtual pressure wheel or “M.V.P. Wheel” puts all of the charts and scales in one place. It is made with patients in mind, and you can choose what each wheel represents for you. If I can help one person by having this tool available to patients, parents, caregivers, and doctors we can cut out some of the questions that patients often receive and maybe even move towards better quality of life. The end goal is to advocate for the patient and their family sooner. When someone expresses that they have a chronic illness, the first thing that many people believe is that the person is in pain. While this may be true, many of us with chronic illness have other debilitating symptoms. Here are some symptoms of chronic illness. This may give you an idea of how hard it may be for a patient to express what is going on in their body to a doctor or loved one. Pain – Pain is physical discomfort caused by illness orinjury. Fatigue – This may be a feeling of exhaustion or lethargy, a lack of energy, or a feeling of “depletion.” Fatigue can be either physical or mental. I often describefatigue as having weights around my body and trying to walk against an undertow. Weakness – Weakness is a lack of physical or muscular strength. We mayassociate weakness with “overdoing” activities. You may feel it in your joints and muscles after a workout or a full day at an amusement park. People with chronicillness may feel weakness after a minimal amount of activity. Sleepiness – Sleepiness is the state of being drowsy, tired, and sluggish.You may think sleepiness self-explanatory, but the word can feel so overusedtoday. For a person with chronic illness, sleepiness can be so extreme that a person could feel like they need to sleep anywhere. It is slightly different from fatigue — which is a need to rest but not necessarily a need to sleep. Numbness – Numbness is being deprived of physical sensation or the ability to move because of that lack of sensation. Dysesthesia – Dysesthesia is sensations like burning, shock, ortightening around the body. For people with chronic illness, this generally happens in the feet and hands — but it can happen in other parts of the body too. You can use my M.V.P. Wheel to gauge which symptoms you experience most and where you experience them on a day-to-day basis. With chronic illness, your symptoms may change slightly each day or each week, so having the wheel with your frequent symptoms is a way to gauge where you are daily, weekly, and monthly. The M.V.P. Wheel can be used by anyone with any condition from mental illness to autism to autoimmune conditions to cancer. I use my wheel in my own life and took it to my doctor along with notes on changes in my health, and it helped us determine when I should call the doctor. Like many other people, I was waiting too long to see the doctor, so using the M.V.P. Wheel was a big eye-opener. You can print out these wheels, make a hole in the middle of each, and number them from zero to 10. You can also use emoji stickers that reflect your symptoms or moods if that is easier for you and your family to understand. There are nine sections on the wheel, and you will want to start with the whitish-blue section and number it “zero to one.” You’ll then label the next section (which is light blue) “two to three” Then, move clockwise, and put the numbers four, five, six, seven, eight, and 10 on the respective remaining sections. Make sure to put your 10 on the bright red section to indicate a flare day. The M.V.P. Wheel has helped me stay in charge of my health, and I hope it helps you do the same. I would love for you to try it out!