This post will upset many of you. I am sorry about that. I’ve been ill for quite some time, but I haven’t talked about it. Brace yourself for the really bad news.
I’ve got cancer. It’s bad, and I’m not going to survive it.
Back in late January 2014 I was diagnosed with stage 4 metastasized renal cell carcinoma. It’s a return of my 2010 kidney cancer (which we thought was cured), but spread, and it is inoperable and terminal. It’s now spread to many areas of my body. I’m all too familiar with this, because my father died from same kind of cancer in 2013. Soon, I will follow him. How soon? It’s hard to say. Back when I was diagnosed, my doctor told me that I was likely to still be here in two years, but perhaps not in three.
In general, I haven’t gone public with this, though I told family, some friends, and colleagues when I had a chance to sit down with them at Macworld Expo 2014. I’ve kept things mostly under wraps because I didn’t want to publicly become Cancer Guy, because I’ve seen that happen to other people I know. Cancer is something I have; it does not define who I am.
Over the past 28 months, we’ve tried a variety of treatments, including radiation therapy and two very different kinds of drugs. I was never under the belief that these treatments would save my life. I was bargaining that they would extend my survival, and overall, they did. But in May 2015, I had to stop the first drug because of a complication. I wasn’t able to restart that drug until September, and three days after that, I had an unexpected allergic reaction to it which gave me a stroke.
That took a few months of recovery, and in February 2016, I tried a brand-new drug that actually offered some hope for a possible cure. Two weeks later, we learned that instead of eating the cancer, the drug turned on me and made my body begin to eat itself. Not a recommended response, so that avenue was done.
At that point, my oncologist said “It’s time to start talking about hospice care.” We met with the hospice nurse in March, and we came to the conclusion that although I’m an appropriate candidate for hospice, I’m not yet ready for it. But it’s definitely in my future, and it will provide me with some good services towards the end of my life.
Let’s Talk About Talking About Cancer
It’s difficult to discover that someone you’ve know for a long time is going to die, and relatively soon. I’ve had a lot more time to think about it than you have, so here’s some ideas.
Things To Say To Me When You Find Out That I’m Dying
This is almost certainly not an exhaustive list, but it seems to be the useful things that I’ve learned people can say. The most common feelings most people have expressed to me is that they feel overwhelmed and helpless. That’s totally normal. If you’re the kind of person who likes to control things or make them happen, add on “frustration” to that list. After more than two years, here’s what I’ve learned are good things to say:
- Express your sorrow and surprise that this is happening to me and Dori.
- Express your empathy. The situation really sucks.
- If you feel moved to, offer help. Most people say something like “Let me know if there’s anything I can do to help.” You’re not obligated to say it. I won’t be offended if you don’t. But don’t be surprised if I accept your offer and ask you to do something. For example, a friend whom I know to be a brilliant social planner recently offered her beautiful home and planning services for a memorial celebration. I would have been a fool to say no, so I didn’t.
- After I die, do anything you can to help Dori. She’s going to miss me a lot, and she’s going to need support.
Things Not to Say to Me When You Find out That I’m Dying
- Please don’t ask me not to die. There really isn’t anything I can do about it. Believe me if there was, I would’ve been doing it for the past 28 months. In fact, I have been doing that for the past 28 months. I know that you don’t want me to die. I don’t want to die either. However asking me not to die is a frustrating request that I can’t fulfill, so it just makes us both sad.
- Similarly, insisting that I can beat this cancer if I just have hope, or if I fight real hard is a crock of crap. I know you mean well, but this is really an expression of your own denial rather than a comment about me.
- Since my diagnosis, I’ve been intermittently sending out an email newsletter. I’ve been publishing it approximately every three months, mainly so I didn’t have to make a zillion phone calls to family and close friends every time there was a medical development, and there have been a lot of them. If you are interested in reading these newsletters from the start, they are all available at this link on Dropbox. Feel free to subscribe if you’re interested in future details. If you have any problems using the links in the PDFs, let me know in the comments here and I’ll add a signup form to this blog.
- If you suggest to me that everything will be better if I become a vegan/vegetarian/ignore Western medicine, or take some bullshit treatment that you read about on Facebook or the University of Google or Joe’s Magical Cancer Cure Site, Dori has volunteered to delete your comment with extreme prejudice and unfriend you for me on Facebook and/or Twitter. The same goes for other superstitions like astrology, homeopathy, drum circles, and rubbing blue mud in my navel. That’s because at this point my most precious commodity is time, and I simply don’t have the time to waste on stuff that isn’t proven to work. “Anecdotal evidence” is a term like “jumbo shrimp” or “military intelligence.” I have already tried all of the things that have been proven to work. I won’t waste my time grasping at straws based on Internet anecdotes. I realize this is going to hurt some people’s feelings. So it goes.
- Along the same lines, I appreciate that your cousin/great aunt/friend of a friend had an amazing experience with cancer after they did blah blah blah, but please keep those experiences to yourself. I do not want to read about other people’s cancer stories. I have all the cancer stories I need. I made my own.
I Think Religion Deserves Its Own Category
I am an atheist. I do not believe in a loving God. I was born with spina bifida, which has made my life difficult and painful in ways that, were I to describe them all to you, you might think that I was exaggerating for effect. Yet this is my real life, and I have lived with it for longer than I have known you. If I were to believe in God, I would tend to think of Him as a malign, sadistic thug, because my childhood was a terrible torment of multiple surgeries and social alienation. Approximately every 10 years since, just when I think that I have a handle on everything spina bifida has done to me, something new and awful happens. Dying of cancer has nothing to do with being born with spina bifida, as far as we know. But it does kind of put the cherry on top of the cupcake.
Back to religion. I don’t have it, but you may. I ask this in the strongest possible terms: do not urge me to get right with God before I die. No matter what, you will only succeed in pissing me off. On the other hand, if you tell me that I am in your prayers, I’m totally cool with that. I’m not a believer in the power of prayer to beseech a God that I don’t believe exists. But oddly, I feel fine and comforted with the idea that other people care about me and are hoping for the best. If that’s as formalized as a prayer, that’s fine with me. If it’s a fleeting thought that you hope I’m having a good day, that’s also okay. But no matter what, I’m not going to get religion at this late date. Don’t try to sneak it in on me that way.
My Current Status
Most days, I’m mentally alert, and despite the stroke, I talk just fine. The stroke did slow down my reading speed, which I find really annoying. Also because of the stroke, I can’t drive the Mercedes I bought right after my diagnosis, which is frustrating to no end. I’m tired a lot of the time, and for now, I use a walker to get around, though I’m about to start some physical therapy in the hopes of getting back on my feet. I’ve also become very familiar with different kinds of powerful pain medication (it’s less fun than it sounds). For now, I’m still having more good days than bad.
I’m going to continue to talk about my cancer. If I have a lot to say, I’ll do it here on the blog and in my email newsletter (described above). Briefer comments will end up on Twitter and/or Facebook. If you have questions about my medical status, feel free to ask, though I reserve the right not to answer.
So that’s the news I’ve been holding on to for more than two years. I’m still Tom; I haven’t become just Cancer Guy. But now you all know I’m a guy who is going to die of cancer, and though we hope it won’t happen this year, it very well might. Wish me (and Dori) well in the comments.