Tag Archives: illness

Blogging, D.B. Jackson, David B. Coe

Update: What’s Been Going On In My Life

In August, after a long retreat from social media and a series of appearance cancellations, I shared with all in a post on his blog that our older daughter, Alex, has cancer. You can read that post here.

Now, several months later, I wanted to offer an update to that original post, and to share some positive news.

Alex is still undergoing treatments, but her doctors have transitioned her from chemotherapy, which in her case was VERY effective, to what they call a maintenance regimen. Essentially this means that the cancer has been knocked back by the chemo. In many places where she had malignancies, it’s impossible to tell she ever had cancer. In other spots, the cancer remains but is greatly diminished.

The maintenance regimen is intended to keep the cancer in its present, reduced state. It prevents new or renewed cancerous growth without inflicting the kind of side-effects Alex suffered through while on the chemotherapy. Put another way, her doctors are now treating her cancer as a chronic condition, one that can be managed without an invasive and devastating surgery, and without further use of drugs that sap her of energy, make her feel rotten, and cause her hair to fall out.

The sobering news is that, at least for now, they do not know if her cancer is fully curable. It may be that they cannot say “her cancer is gone and it’s not coming back.” This remains to be seen. The reassuring and offsetting news is that they can keep her on the maintenance regimen indefinitely, for the rest of her natural life if they need to. Because Alex responded so well to the first chemotherapy “cocktail” they tried, her doctors have plenty of other treatments they can use on the off-chance that the cancer reasserts itself. And research on exact DNA mutation that caused Alex’s cancer may, before long, yield even more effective, and possibly curative, treatments.

And so it seems she is on a good trajectory, if not yet cured.

I have to admit that adjusting to this outcome has taken me some time. I have lost my mother, my father, and my oldest brother to cancer. I am a gold-circle member of the “Fuck Cancer” club. More, I am shaped by a 20th century view of cancer as a binary phenomenon. One has cancer or one doesn’t; one beats cancer or one dies from it. That has long been my understanding.

But 21st century oncology is not always like that. For some patients with some forms of the disease — including Alex and hers — cancer is something that can be lived with, controlled, kept in check.

From the start, I have wanted nothing more than to be able to announce to the world that Alex is cancer-free. For now, that is more than I can say. But short of that, this is as good an outcome as I could have hoped for or imagined. We will worry each time Alex has a new set of scans to assess the state of her disease, but that was going to be true under any scenario. What matters is that she feels fine, the symptoms associated with her cancer have gone away, she is otherwise healthy and happy, she is working, seeing friends, having fun, living her life, looking forward to the return of her gorgeous hair, which has been an identity marker for her all her life. And the rest of us — Nancy, our wonderful younger daughter, Erin, and I — are breathing easier and recovering ourselves from the emotional ordeal of the past eight months.

I want to thank all of you for your support and friendship during this period. Every expression of concern, every word of sympathy and encouragement, every act of kindness has meant more to me than I can convey.

I look forward to returning to a more normal routine. I intend to be more of a presence online. I plan to attend more conventions in the coming year. Having re-started the newsletter, I will continue to publish it monthly, with the usual giveaways and previews of upcoming releases. (You can sign up for it here!)

Again my thanks to all of you. It’s good to be back.

Blogging, D.B. Jackson, David B. Coe, Writing

What’s Been Going On In My Life

As some of you may remember, back in March I pulled away for a time from all social media. And, as you may have noticed, even now my social media presence remains limited. I haven’t been blogging regularly. I haven’t been sending out my newsletter. I have been far less “chatty” than usual. And there is a reason for all of this.

In March, our older daughter was diagnosed with cancer.

The months since have been the longest and most difficult of my life, and our ordeal is far from over. She is undergoing treatment and has responded well so far. Her spirits are good — remarkably so. She is, as I already knew, one of the bravest, wisest, strongest, most positive people I’ve ever encountered. Even in this most difficult time, I am so very proud of her. And I know that her attitude has been and will continue to be a most potent weapon in her battle. That said, though, the cancer had progressed significantly before it was discovered and she still has a long road ahead of her. We are hopeful in the long-term — we believe we have every reason to be — but again, this is hard.

We are grappling with fear, uncertainty, the sadness that comes with knowing our child — yes, our adult child, but nevertheless — is suffering and there’s not a damn thing we can do about it. We are grieving for all we’ve lost as a family. Not because we doubt that she’ll recover. But because, even after she is cancer-free, we will, all of us, live for the rest of our lives fearing a return of the illness. We as a family — not just Alex, not just Nancy and me, but also Erin, our beloved younger daughter — have lost our innocence in a way. We’ll never be the same.

There was a time, early on, when I was exchanging texts with my brother about one development or another, and I wrote something about “Alex’s oncologist.” And I had to pause to say to myself and to him, “Fuck, my daughter has an oncologist.” The past several months have been filled with moments like these. Times when I catch myself saying things no parent ever wants to say and thinking of things I never in my darkest dreams thought I would have to consider.

At times, work has been a balm, and I have been able to lose myself in my writing or the freelance editing I’ve been doing recently. At times, I can’t do anything at all. I have started therapy, which has been wonderful for me. I have continued to exercise and eat well. I have managed not to drink myself into oblivion even once, though I will admit to being tempted on more than one occasion. I sleep moderately well, but often wake up feeling utterly devastated and sick to my stomach. Nancy and I still manage to have fun when we can. We also take turns comforting each other. One day one of us will be okay and the other will be a wreck. The next day we’ve reversed roles.

Mostly, though, we move through life and work and quiet time feeling like we’re wearing those leaded bibs they use at the dentist’s office when you’re getting x-rays. Everything is weighed down. Everything is harder, more wearying. Our tempers are a bit more frayed. Even our best days are only so-so, and our worst days are bleak and seemingly endless.

Before now, I hadn’t wanted to make this sort of public pronouncement. I’m not entirely sure why. Alex has been very open about being sick and has made it clear to the rest of us that she doesn’t consider her illness a secret to be guarded. Maybe I feared “announcing” it would make it feel more real. Though honestly, I don’t know how it could be any more real. Maybe I just wanted to put off the exchanges of messages and comments that will inevitably follow a post like this one. Maybe I wanted to avoid the tears I’ve shed while writing this.

Whatever the reason, I felt that with everything else I’ve pulled back from this year, my cancellation of my appearance at DragonCon warranted an explanation. The fact is, even with all the precautions the convention has taken — and the con committee has been terrific in this regard — I fear exposing myself to the Delta Variant of Covid-19 in advance of a visit with our immunocompromised daughter. I am sorry to miss the convention. I am sorry to disappoint those of you who looked forward to seeing me there. I hope and plan to attend in 2022, when this latest surge in the pandemic is a distant memory, and our daughter is on the mend.

Many of you, I am sure, will want to help in some way. The fact is, there is not much anyone can do right now. I welcome and am grateful for your expressions of support and friendship. I would, however, ask two things of you: 1) Please respect our privacy. I have shared what’s going on with our family. I have no intention of filling in additional details. And 2) Please do not share your cancer stories with me. I know they are kindly meant, and I thank you for your good intentions. I also know they will do nothing to help me, and will in fact increase my anxiety.

Otherwise, I ask only that you spare a positive thought for my daughter, my family, and me.

Thank you so much for reading this. Take care of yourselves. Be kind to one another. Hug the people you love.