Hope for a Durable Remission

I have a PhD in Gender Studies. Well, not literally of course, but you get what I mean. I earned it by spending hundreds of hours researching how to rescue my brilliant, quirky, socially awkward, probably mildly autistic daughter from the transgender cult. I can now refute every “born in the wrong body, lifesaving medically necessary, not actually happening to children, why do you care so much, just be kind” talking point with ease. Never one to settle for mediocrity I actually “double majored”. While earning a PhD in gender I also earned an honorary nursing degree being the primary caregiver to a son with leukemia. I can now make sense of a CBC, silence the alarm on an IV infusion pump, and probably even place the needle to access a chemotherapy port. I’ve written about this for PITT. It’s been a long three years. My “dissertations” are in two notebooks. My cancer notebook is in the backpack I take to the hospital. It’s full of clinic notes, questions to remember to ask our oncologist, labs results, dates of chemo, etc. My gender notebook is hidden in my nightstand. It’s full of talking points, advice from other parents, lists of podcasts, notes from books I’ve read, facts and figures, etc. My daughter knows this notebook exists. I’ve pulled it out occasionally during discussions with her.

My “degrees” have been put to good use. With my daughter, I’ve applied what I’ve learned and have seen success. Very slowly, sometimes quietly, sometimes with angst and anger, in a two-steps-forward one-step-back motion, my daughter has desisted. Light and life are coming back to her eyes. Anxiety and depression are being addressed in legitimate ways. Trust is being restored. My son is also doing well. A few months ago we celebrated his last day of chemotherapy by ringing the bell at the hospital. He’s moved about an hour away to college and is reclaiming his life. We still have regular checkups with our oncologist. And we hold our breath, and hope and pray he stays in remission.

I have a lot to be grateful for. And yet, I still feel clenched inside. Like I can’t quite exhale completely. I find myself in tears. I think it’s my body trying to release the persistent feelings of trauma and anxiety. I’m trying to pick up the pieces of life and move forward, but I’m struggling. I’m not quite sure how to do that. When my son rang the bell at the hospital my mom exclaimed, “Oh, how wonderful that you’re done!” But cancer is never really done. At our first appointment with the survivorship team they gave us a multi-page printout listing the fourteen different kinds of chemotherapy my son had with all the potential short- and long-term side effects: damage to his kidneys, liver, nerves and heart, secondary cancers, infertility. It felt like getting another diagnosis. He’ll have annual survivorship appointments for 19 years! My mom also cautions me to be done with all the gender stuff too. She understands that sometimes I feel consumed by it. But having experienced the absolute havoc gender ideology wreaks on families and society it’s impossible to look away. My daughter needs a survivorship team to help her cope too. She was convinced for a time that she might have been born in the wrong body because she feels real distress. There’s a mental multi-page printout of what she’s been through.

After being shocked twice, first with my son’s diagnosis and then my daughter’s announcement of a trans identity I feel like I’m constantly on high alert. When something bad happens to you, you know that bad things can happen to you. I’m scared to let my guard down.

A few weeks ago my son texted me. “Mom- I have a fever.” Immediately I felt my heart begin to race and tears sprang to my eyes. My thoughts jumped to the worst-case scenario that his cancer had returned. “How high? For how long?” I texted back. My mind raced - call the hospital, pack a quick bag, make a mad dash to the ER. A second text from my son came through. “My roommates have fevers too. Lots of kids on campus are sick. But I just got really worried thinking… you know.” I took a deep breath. Calmed myself down. Called my son and got him calmed down too. Just a virus. Everything’s OK. But I know I’ll never be able to stop worrying. And it feels the same with my daughter.

Oncologists and cancer families are hesitant to say the word “cure”, like it might be a jinx or tempting fate. Instead, we talk about “durable remission.” And we knock on wood while saying it. Only time will tell if my son and my daughter are in a durable remission.

Recently my sister emailed me asking if I had read this article from PITT with a gentle reminder that I needed to take care of myself. I replied that I had read it and like all good advice from PITT was taking it to heart. I sent her two quotes I read on cancer social media sites that have resonated with me. Maybe they’ll resonate with you too:

• You gotta resurrect the deep pain within you and give it a place to live that’s not within your body. Let it live in art. Let it live in writing. Let it live in music. Let it be devoured by building brighter connections. Your body is not a coffin for pain to be buried in. Put it somewhere else.

• I think there is pressure to turn every negative into a positive. But we should be allowed to say, ‘I went through something really strange and awful, and it has altered me forever.’

So, for now I’ll continue to try and find a balance between putting my hard-earned knowledge to use while working to heal my heart and my home. I’ll participate in cancer walks and fundraisers, wear my gold t-shirt in September for childhood cancer awareness month, and do what I can to support other cancer families. And without exposing my daughter I’ll talk to everyone I can about the dangers of gender ideology, sign petitions and write letters for calls to action, and do whatever I can to support families with kids caught up in gender. But I’ll also focus a little more on my own healing. I might learn to play the harp. I’ll make a quilt. I’ll take a walk outside with a friend. I’ll find good books to read. I’ll stand in my kitchen making comforting food. I’ll give dedicated focus to a job I love. I’ll hug each member of my family tight. And I’ll continue to hope and pray for every PITT family.