Today is the ten-year anniversary of my cancer diagnosis. (Is there another word for anniversary that denotes something terrible happened this day, instead of a wedding?) All week, I’ve been thinking about what I want to say about this day. I’ve been wondering what I can impart that is honest and witty and optimistic.  Today, I realized that those were not the metrics I need to express my thoughts and feelings and body sensations about this day.  Instead, I’d like to share this list. This is what I want to tell you about that day, and this day, and a lot of the days in the last 3,650.

I am glad to still be here to be a mom. My kids were 4,7, and 10 when I was diagnosed. They have gotten to grow up with a mother, and I have been witness to birthdays and first girlfriends/boyfriends, and have helped two of them learn to drive. Grace will turn 21 this December, and I’ve gotten to watch her graduate from high school and become, as she calls it, adult-ish. Caleb has found his voice and will graduate in May, turn 18, and go to college in the fall. Isaiah is rounding out his last year in middle school, and in September will get his learner’s permit and I will be done paying for braces! Alleluia.

I love my career as a counselor, and am extremely proud of all that I have accomplished in the last ten years. Leaping into grad school with chemo brain and not being sure that cognitively I could handle the rigor was scary, but I did it, and that felt amazing. I also showed my kids that it’s okay if you don’t know what you want to be when you grow up until you’re in your forties or beyond, and that you can have multiple careers if you want to. Because I have faced death, I can sit with others who are facing death or experiencing deep emotions and not look away.

I have made some deep friendships because I had cancer that I might not have made otherwise, and some of the friendships I had have gotten stronger as I let people support me. I have also lost friendships because of cancer, and that has been surprising and painful. And some of my friends have died of cancer, which is depressing as hell.

Getting diagnosed with cancer and cancer treatment are a million traumas. Living with a disease that has no cure and is referred to as “no cancer we can see” is exhausting and some days totally fucks with my head. There is no cure for breast cancer, so just because I am ten years out does not mean that I am home free. One third of people diagnosed with breast cancer will develop metastatic breast disease and die from it. I have metastatic disease and luckily am beating some bad odds.

Sometimes people say to me, “But you’re fine now, right?” Next to comments about free boob jobs, this is the single most annoying thing I hear. No, I’m not fine. I have lymphedema in my left arm and chest, which causes swelling and pain, and I’m not supposed to lift heavy things with that arm, and if I do, sometimes it makes the swelling worse for months afterward. I have neuropathy, which is nerve pain in my hands and feet, and sometimes other places, too. I have been in menopause since age 37 and cannot take hormones. So my skin looks is papery and wrinkly like my grandmother’s skin when I was a kid and I told her she had chicken skin. I have developed fibromyalgia and IBS, common diagnoses for people after treatment. I have scar tissue all over the front side of my torso from all of my surgeries, and it causes pain sometimes when I use my stomach muscles or lay on my belly, but not all the time, so it’s unpredictable and that also feels like mental torture. Will it hurt to bend and twist or not? Who knows. I’ve gained a lot of weight. Also normal after treatment because treatment causes premature aging and bodies gain weight as they age, and because some of the things I did to keep a smaller body are not things I can do anymore, like run. I used to have the best eyelashes. I never even owned maskara until after I lost my lashes during treatment. It may seem like a little thing, but it’s not. I never have a day without pain somewhere.

What I am most desperate for people to understand is that, next to a cure, the thing that would have made this all exponentially easier is universal health care. After ten years, this is the first year I am earning what I earned the year before I was diagnosed. The day I was diagnosed, I was told by the financial person at the breast surgeon’s office that I was underinsured, and that I needed to cancel my insurance and pursue one of the other options she gave me. After disclosing all of my health information and financial information (tax returns, divorce decree, bank statements), I was able to get services through a non-profit for a few months, and then when that ran out, I was forced to get on Medicaid. Being on Medicaid was humiliating because I know what many people think about “government handouts.” Chemotherapy, surgery, and radiation are not gifts I should be grateful to have been able to squeeze myself into the eye of a needle to receive. I was on Medicaid for over eight years, and every single time I heard a joke or comment about government handouts, I felt shame. It was my only hope of survival, and it was a second devastation. The shame of it is close to me still, and I am weeping as I write this. Because I was on Medicaid, I had an income cap that I could not go over without being kicked out. But the amount I would have to earn to afford an insurance plan through the ACA that my cancer doctors take, and to pay the copays and other fees, was more than I could earn for a long time as single mom without the stamina to work a regular 40-hour/week job. In 2020, I spent over $8,000 on health insurance just for myself, and $8,000 in medical expenses, and took home just barely more than my net income when I was on Medicaid. The system is inhumane. We have value because we were born, we do not need to earn the right to have our lives saved. Medical debt is one of the biggest causes of foreclosures in the richest country in the world. I tell you all this not because I want your pity. I do not want pity. My life is incredible, and I am privileged to have had health care, to be able to get an education, to live in a house in which I am building equity, and to have a thriving counseling practice. I am telling you this so that you can help be a witness. And then be a change agent. Health care is a problem we can fix, if we want to.