Poetic License

If I had a magic wand what would I do with it? It is the question I asked my teams this week. Each one of the team members gave me a different answer, but they were all related to something we could improve at work. I didn’t put limits on them. No one asked me what I would do with my magic wand. My impulse answer would be simple: to cure cancer.

Of course, I can think of a million other ways to use that magic wand, and maybe that’s why a magic wand is just the fantasy of an active, collective human imagination. The things we might do with it would be so varied and such odds that we would soon destroy that which we so desperately seek to preserve—human life. But don’t we have a magic wand? Don’t we have free will? It might seem as though we don’t, sometimes, as though the will of the world or God or the devil might be forcing real challenges upon us. We think we have no control. Well, I’m here to tell you that you’re right. Control is just an illusion. But we do have power over our individual choices.

Have you been born into a violent family? You don’t have much choice in the matter (other than to run away and take your chances in a foster care system or on the streets), but you do have a choice as you get older in how you learn to deal with your past, how you learn to deal with stress. I find that among my siblings, we don’t deal with stress well. Some of us have medication on hand to quiet those racing thoughts, the ones that catastrophize. If someone is late, they must have been in a fatal accident. If your spouse isn’t talking to you incessantly, they must be mad at you. Those are the types of things that become part of our fabric when we grow up in an unstable environment, because deep down, the child within us feels that it was somehow our fault that things were so bad at home. You must grow up and take charge of your emotions and responses to stress. Otherwise, you do begin to feel caught in an out-of-control loop that constantly kicks you, like a boot on a wheel in the cartoons, and you think you have no free will.

So why do I think a magic wand would help me to cure cancer? Shouldn’t I have become a research scientist instead? Shouldn’t I be developing new drugs? Remember. This is just a magic wand exercise. God had other plans for me. I was meant to do exactly what I did.

When I look back, I realize that my body was never really well after we lived on Camp Lejeune. And I was meant to bear two beautiful children, even though one of them died, because it is my unique gifts and strength that enabled me to love them like mad, no matter what. Was I perfect? Oh…no. I was far from perfect. But as I reflect on the things I did, said, and bore, I realize that each of those things built me into the person I am today. Each step and choice I took on my career path, even though sometimes they were almost unbearable, landed me in a place and a job where I can work out of my home office and not put additional stress on my body with a long commute, such as I had up until 2019. I realize that moving to a small town in the hills of North Carolina has put me in a position to retire in a few years when my eyes grow too diseased to see a computer monitor. I’ve started testing out the dictation in Microsoft, which will allow me to continue to write, even after the vision renders me legally blind.

I’m grateful for the love I have with my son, and my friends, and my family. I’m grateful for the phone call I got from my eldest brother just the other night. It soothed my soul to hear from him, because those phone calls are few and far between, and he isn’t well. He is healing from multiple fractures in his right (dominant) arm, and the healing is slow because of diabetes and osteoporosis, and just age. Despite all the things that could depress me, I persevere. I continue to try new things (though not as many as before my vision started to worsen) and make new friends and live my life with purpose. I’m very grateful my son wants me to live with him again. We know that I need to have my own quarters with the ability to be very independent, but eventually I will lose my ability to drive (unless the new ophthalmologists I’ll be seeing over the coming months have a miracle up their sleeves) and will need him to “drive Miss Daisy,” as he jokes. Not everyone has a son like Sean. And I guess I could say, not every man has a mother like me. I must take a little credit for our relationship, after all.

But back to the cancer cure. I know that researchers keep getting closer every day to making cancer a chronic condition rather than a terminal one—or at least reducing the percentage of people for whom cancer is a death sentence. I was telling my boss the other day that if I’d gotten my cancer before 1998, when Herceptin (Trastuzamab) was approved for use in treating breast, stomach, and esophageal cancers, I would not be here now. If one can be lucky in getting cancer, then I am incredibly lucky.

My cancer came after Herceptin was fast-tracked to approval in 1998. My cancer had the HER2/neu oncogene on its surface, which allowed a pathway for rapid reproduction by the cancer cells. Just six months after a clear mammogram, I found a large lump and was found to have a tumor that was almost 9 cm in length, and 4 cm wide. Contrary to popular belief, cancers aren’t generally round and self-contained. They have a crablike appearance (hence the astrological name), with tendrils snaking out in many directions, carrying the cells toward distant parts of the body. Herceptin turns off the oncogene (or greatly suppresses it), which helps chemotherapy destroy the tumor by controlling its spread. I was also lucky in that – even though my cancer was already in nearby lymph nodes – I had a complete response to chemotherapy. I could have had a small lumpectomy, but I chose to have a reduction on both sides, since the doctor was going to cut into my axillary space anyway, to take out nearby lymph nodes. I was lucky that Sean was living with me at the time. He had sold his house and was looking for a place to live in North Carolina, so he was going to stay with me for a short while. He ended up staying for another year and a few months. He drove me to most of my treatments, cooked for me, took care of my cats and my dog, kept my friends updated from his point of view, and so many other things required of a caregiver. I tried to protect him from the worst of my feelings and side effects, but he knew. He was there for all of it.

I was also lucky that I had good health insurance at work and a very understanding boss. I refused to take off work for any time other than a few weeks while the Adriamycin (aka, Doxorubicin, aka, The Red Devil) destroyed my hair, my skin, and my energy, and another few weeks after surgery. The Herceptin alone costs an average of $70,000 for the course of treatment. Add to that, the $40,000 for the Adriamycin and Cytoxan (for 4 rounds), and countless other costs for the prescription medications, port insertion and removal surgeries, 12 rounds of Paclitaxel (Taxol), and the myriad other costs associated with nursing and physician care, home health care in the two weeks after surgery, and on and on. I don’t know how much it all cost, because in the end, I was simply grateful that it was covered, aside from a few thousand in co-pays. And I survived.

There were other costs, too, some of which I will deal with for the rest of my life. Even with all the drugs and my response to them, I have about a 30% chance of recurrence. Decent enough odds but enough to make me look over my shoulder when a new symptom arises. “Survivorship care,” with all those doctor visits, scans, medications to treat long-lasting side effects, and lots of ancillary care that involves everything from special kinds of bras (none really fit very well), topical pain cream because I can’t take nerve pain medication, and a need to see a dermatologist because my skin was pretty damaged from all the treatment. I will also need to see a cardiologist for yearly echocardiograms because of the cardiac effects of some of the chemo and targeted therapy I received. My right hand and part of my face have taken the worst of it. I really don’t like for anyone to see me without makeup, and I’ve gotten pretty good at applying it, but don’t look too closely, please.

But I wish I’d never had to go through this in the first place. That magic wand, you know. And for the friends I’ve lost to cancer, I wish they had never had to deal with cancer. For the friends I have now who are dealing with metastatic cancer, I wish they had a cure. I wish no one ever had to hear the words, “I’m sorry. It’s malignant.”

Free will, though. I choose to keep fighting the long-lasting effects of cancer and cancer treatment. I choose to keep making friends and planting flowers and doing all of the things that signal I still have life ahead and that I have hope it will be a good, cancer-free rest of my life. I choose to look forward at all the good things I believe will come my way.

But that doesn’t take away all my fear, or that looking-over-the-shoulder impulse. I simply keep adapting my life to the changes that have come and keep coming my way. It doesn’t take away my sadness over those I’ve lost and those I might lose. Some days I must make a conscious decision to find something to be positive about. The people in my life demand that I be positive, which causes me to pull back from them when I’m not feeling so positive. Sometimes I don’t answer the phone. I know that at times they think I’m mad at them or fed up with them, but it’s about protecting myself. It can be exhausting to look after someone else’s feelings when you have such heavy ones of your own.

Today, I am choosing to control that which I can control. In this case, it means I need to focus on doing some cleaning and tidying in preparation for a friend’s arrival on my birthday next Friday. I’m looking forward to Mother’s Day tomorrow, a day to be spent with my son. Though I am missing my daughter, because she often did incredibly sweet and unexpected things on Mother’s Day, I am celebrating the wonderful relationship with Sean. He is one of the two greatest gifts to me from God, and I take being his mother seriously.

I hope you all have a wonderful Mother’s Day, and if you are able, please give to a cancer foundation of your choosing, particularly one that researches women’s cancers. It’s the closest thing you have to a magic wand. The mom you save could be your own.

Namaste, Jude