The title pretty much says it all. I am still alive. Holy crap, praise the god of your choice, it’s an effing miracle.
Pardon my language, but if you were me you would probably be egregiously slinging expletives as you jumped for joy as well. Or running naked in the streets screaming “ha ha ha! You can’t catch me, reaper. Not today. NOT TODAY!”
Because one year ago today, I was diagnosed with stage four kidney cancer. There is no cure, and there are few treatments. Unlike other cancers, kidney cancer simply shrugs off chemotherapy and radiation, making it nearly impossible to kill. It’s aggressive. It’s sneaky. It’s terminal. It has no symptoms until it’s too late to cure.
I was blindsided. Who wouldn’t be? Kidney cancer is most common in smoking, obese men over 60. It rarely appears in people under 50, and less often in women. So here I was bopping along as a relatively thin, non-smoking woman in her early 40s with no risk factors, no health problems, and no family history of kidney cancer and blammo. Who me? There must be some mistake. I exercised. I drank green tea every day for ten years because it prevented cancer, and I ate organic food I grew in my own effing garden. If there was a list of what to do to not get cancer, I’d have a check mark in every box. This couldn’t possibly be happening to me.
My first oncologist was a real charmer, too. Let me say this loud and clear : NOT ALL DOCTORS ARE CREATED EQUAL. The unsympathetic Dr. Ass Hat (I’m being generous with that nickname, trust me) actually shrugged when he said “Oh well. There’s nothing we can do for you.” Then he told me I’d be dead by July and to just get over it. Get over it? Tell that to my kids.
Yet here I am with both middle fingers up to you, Dr. Ass Hat.
Still, I won’t lie. It’s been a very hard year. There’s a lot of crazy shit you don’t know about life with cancer until you get cancer. Like, exactly how many (too many!) cancers are actually incurable. Like, that you’re just as likely to die from pneumonia or flu than the tumor, because your body can’t fight cancer and other bacteria or viruses at the same time.
Or that you can die from starvation. Some of us get a wasting disease called Cachexia. On top of that, cancer and the drugs to treat it make it nearly impossible to eat. Your appetite disappears. You get blisters in your mouth and throat, and food tastes bitter or like metal. Eating is painful, and if you do manage to swallow something, you’ll barf it all back up because the medication makes you nauseated. Then you cry over the toilet as you flush down your hard-fought lunch, because the doctor says you’re literally starving to death and need to eat, but eating is so hard. So So hard.
Let me tell you a few other hard truths.
Cancer destroys relationships. People mean well, they really do, but they honestly don’t know how to treat you once they know you’re terminal. They withdraw. They stare at you with sad pity eyes and stop talking to you about their lives because they believe “your problems are so big, I can’t possibly bother you with mine.”
People you were once close to exclude you, because you’ve become the angel of death in every room you walk into. I managed to change most of this behavior by straight-out telling people that I am still the same person I was before the tumor showed up. Here’s a handy tip: Just treat me like a normal person. Do that for other sick/disabled people, too.
Dealing with family is worse. My mom nagged me to eat. She’d bring over ever more elaborate, home-cooked meals, convinced it would inspire me to eat, then she’d yell at me or cry when I couldn’t eat it. Hubby stood at the foot of the bed sobbing and yelling if I slept too long, screaming that only dying people slept that much. It was constant nagging, yelling, and projectile crying. Not because they’re mean, but because they were devastated by the prospect of life without me. They didn’t understand that I couldn’t just will myself to eat or be awake. It was all biology, medication and tumors altering normal functions. Honestly, I couldn’t deal, so I faked it. I lie. I still do. I pretend to feel better than I actually do, because the truth will hurt them. I rally, so they won’t cry. That’s just the way it has to be. I don’t want them to hurt, so I bury my pain and fear.
Faking isn’t easy because cancer drugs absolutely rip you to shreds. I started treatment at the end of January 2018. By June, I had painful blisters in my mouth and on my hands and feet, that made it nearly impossible to walk, type, eat or speak. All my hair turned bright white (See photo. I’m definitely not rocking those white eyebrows.). I was so exhausted, I slept 18 hours at night and then when I finally dragged myself to the sofa (refer back to hubby sobbing and begging), I had to nap for an hour for every hour I was awake. I was so nauseated all the time that brushing my teeth made me throw up. I lost 40 pounds and was all skeleton. The drugs shot my blood pressure sky high, and no pills could bring it down. The cancer meds then gave me Pres Syndrome, which is brain swelling. Suddenly, my body went numb and the words I was thinking in my head came out of my mouth as gibberish. I appeared to be having a stroke, couldn’t communicate, then the seizures started. I had three days of seizures, during a lovely (kidding, it was definitely not lovely) 13 days in the hospital.
This part was so bad and so scary, my family thought this was The End, as in D took her final bow, so call the mortician and ask if the crematorium is available on Thursday. Friends flew in from all over to say their final goodbyes to me as a roomful of doctors and nurses CPRed me back to life. I don’t remember the first four days in the hospital, which I realize is a blessing, but it’s clear my friends and family will never forget it. A hush falls over the room whenever it comes up. Yes, they say, they thought they were losing me then.
But No. Not that day either, reaper.
Long story short, I stopped taking that medication. (Cabometyx, if you’re asking.) This is bad news because at the moment, there are really only about five treatments for kidney cancer, each one less effective than the one before it, so the longer you can stay on each medication, the longer you’re likely to live. (I should say endure, because it’s frankly not much like living.) My doctor had hoped I could last eighteen months, not six, on Cabometyx. He and I were extra bummed because this medication had actually shrunk my tumor slightly during the first three months I was on it. SHRUNK!
That’s a big deal. Here’s why: Success, in kidney cancer, is defined as keeping the tumor the same size. In other cancers, success is remission or tumor shrinkage. But those things rarely happen with kidney cancer. The cells are so tough and so resilient, they don’t give up easily. They also become immune to treatments very quickly, so even if a medication works for you, eventually it will stop working. The Cabo had already stopped working by the time I landed in the hospital, and the tumor had already started to grow back.
So I started my next treatment: Immunotherapy. You’ve probably heard of it. The doctors who invented it just won the Nobel Prize. And, you might have seen these ads for Opdivo. You know, the ones full of happy people leading normal lives, all smiles, despite having cancer? Those ads used to make me irate and make my sister cry. Feeling good and normal isn’t reality for most cancer patients. Even immunotherapy only gives any sort of response — meaning the tumor stays the same, shrinks, or disappears– in about 50 percent of patients overall. In kidney cancer patients, the odds are even worse, at closer to 38 percent.
I got lucky and landed in that 38 percent, and I’m pretty sure it’s the only reason I’m still alive today. The changes were subtle, at first.
First, I could stand up and walk without getting dizzy. (The dizziness used to be so bad that I considered buying a T-shirt that said ‘No Narcan, I have cancer’ because I was at the thrift store buying a costume for my son’s school project, and nearly passed out standing in the checkout line. I heard someone comment about letting me die because I was a ‘stupid drug addict.’ I get it. I look too young to be a cancer patient, but thanks for the compassion people. Seriously. You have no idea what is going on in someone’s life just from looking in from the outside.)
Anyway, about a month after I started Opdivo, food started to taste like food again. And I was hungry. HANGRY really. I couldn’t eat enough, and it all tastes. So. Good. Eventually, my rapid weight loss stopped, then reversed. I gained back 20 of the 40 pounds I had lost.
In the process, I learned the U.S. has an unhealthy obsession with thinness. After I forced myself to clean-plate a giant platter of restaurant food, a young woman told me she was jealous that I could eat that much and stay so thin. I flat out told her the key to model thin is stage four cancer.
I digress. Eventually, I was able to take a walk, to ride my bike, to run errands, to hand out Halloween candy dressed as a giant unicorn on Halloween night, to take my kids to the movies and go to their school events, as if I were a normal, healthy person again. After seven months being sidelined and feeling awful, life was worth living again.
In November, I got my CT scan. Now, you gotta realize people in the cancer community talk a lot about ‘scanxiety’– the fear of getting your cancer scan results. It’s a real thing. Waiting for the doctor to come into that room and read your results is downright painful because it’s literally life and death, and you’re powerless. You get what you get.
But I, for once, got something good: “significant response” to the immunotherapy. My tumor had shrunk by not quite but nearly 50 percent. My doctor, normally very subdued, could barely keep from smiling. And I felt, that however briefly, I got a small break from the sword of Damocles that’s been hanging over me. I became part of a very small club: Kidney cancer patients who respond to immunotherapy and see significant tumor shrinkage.
I’d like to say I’m all Han Solo casual, yelling “Never tell me the odds!” but I just can’t, ’cause I just want to live much too much.
First, I want to be part of the nine-ish percent of kidney cancer patients who get a ‘complete’ response, meaning there is no visible sign of cancer left in the body, from the immunotherapy treatment. Technically, it can’t be called a cure, because the drug is still too new to know if it works long-term, but it’s the closest I can ever hope to get to a cure. And second, I’d like to be part of the 8 percent of kidney cancer patients who live five years or more after being diagnosed as stage four. My kids are only 9 and 10. I’d like to see them grow up.
I’m on my way. Today, I joined a pretty awesome club: The lucky 37 percent of kidney cancer patients who live through the first year after a stage four diagnosis.
Don’t get me wrong. My life isn’t glamorous. I spend a lot of my time in the hospital getting IV infusions, CT scans and MRIs and seeing specialists, and hanging out in waiting rooms with little old men with kidney cancer who wonder if I’m there with my dad. (Nope. Here with my own damn tumor.)
No matter what happens, I don’t plan to waste whatever life I have left. Yes, I’m finally back writing again and hope to have the last Guardians of Salt Creek book out soon, and to start a new series that I’m super stoked about.
But, even more important, I’m hoping to work with either Ohio State University, where I am treated, or the Kidney Cancer Research Alliance to fund new, badly needed kidney cancer research. The sad truth is no one who funds cancer research gives two fucks about kidney cancer, even though research equals cures and it’s one of the ten most common cancers and has one of the lowest cure rates. (currently about 6 percent, and all with a treatment called high-dose interleukin that few hospitals even use anymore.)
To put it in perspective, about 60,000 people a year get leukemia. It got $250 million in research funding in 2017. About 60,000 people a year get kidney cancer, but it only received $45 million in research dollars in 2017. There’s so much we don’t know about kidney cancer. The knowledge is leap years behind the cancers that get all the press, like breast and prostate. Lack of research is literally killing me, so I’ve decided to do something about it. Raise money.
I’m gonna host some fundraisers, as well as give all of my book sales to the fund research. If you want to make a difference, make a donation to the Kidney Cancer Research Alliance, which gives $100,000 grants to researchers looking for a cure.
Anyway, all that research is probably too little too late to save me, but maybe someday it could save someone else like me: a young(ish) person who got a nasty tumor, and who desperately wants to see his/her children grow up.
That’s all for now. Thank you for all of your love and support, and thank you for listening!
*Oh wait, except it’s not all. Here are a few more examples of how awkward human relations can be once word spreads you’re terminal. People you barely know get too involved/helpful. For example, there’s the guy who emailed me four times begging me to go see a faith healer in the Brazilian jungle. BTW, that healer was just arrested for molesting a few hundred women. Too bad I didn’t go see him.
A couple other people added me to some alternative healing forums without my permission, including a CBD oil scam and a cancer-curing crystals group. Did you know sapphires shrink tumors? Yeah me either. Ahem.
Anyway. Other folks– not close friends, more like random people from the outer orbits of our social solar system– just started showing up at my house at all hours wanting to ‘visit’ and air their big feelings without asking or calling first. That’d be fine if we were close but these weren’t those kinds of relationships. Worse, it was pretty clear they didn’t do it to make me feel better, they did it to make themselves feel better. So yeah. Life with cancer is awesome. I hope you never have to see for yourself!
AND… then there are the super awesome people who went to my fav church in the whole universe, Our Lady of Guadalupe in New Orleans, and lit a candle for me in the St. Jude shrine. He’s the patron saint of hopeless causes, and while I’m not religious, per se, I’ve spent a lot of time lighting candles and reflecting in that place. For the record, I projectile cried every time y’all sent me a picture of the candle you had lit for me. Thanks y’all. It means a lot. And clearly, St. Jude’s got my back.