Rob & Linda's 1st anniversary
News is the hardest thing to write
I've dumped a lot of our bad news on you, ever since that ER visit at the beginning of April. I seem to lead off all of these posts by talking how hard it is to write these posts, because I keep rediscovering that fact every time.
I've been making a new discovery with this one. Somehow, good news is even harder to write.
Where we were
As I wrote in previous news posts, Linda's liver is full of tumors. They're pretty big ones, and she has a lot of them. She got a PET scan and a liver biopsy within a week of detection, and she was diagnosed with metastatic (Stage IV) adenocarcinoma within days of her biopsy. We spent most of April and a lot of May trying to find the original site of that cancer. Linda had a port-a-cath implanted in her chest, and began bi-weekly FOLFOX chemotherapy.
In my news posts, I didn't stray too far down the path of what that diagnosis meant. But if you even lightly Googled it then I'm sure you saw the same kinds of soul-freezing numbers I did. It's reasonable to characterize this cancer as a death sentence, and a quick one. We were looking at less than a coin flip that we'd spend another Christmas together. Not seeing our first anniversary (or even the Fourth of July) was a distinct possibility.
Our team of cancer warlords did so much for us. They came up with some amazing Parsonesque gambits to try, and some cutting-edge research which gave us very plausible reasons for hope. But hope lived in the kingdom of clinical trials, new discoveries, and miracles of the Clarke's Third Law kind.
We were being soberly told by both her clinical oncologists in Richmond that, "this is not a cancer that patients normally recover from."
Where we are now
In the news post that was called "The fight is strange," I covered the fact that adenocarcinoma was a misdiagnosis.
Johns Hopkins Hospital pathology was our second opinion source (at the urging of our Chief Warlord). Late in May, we got a call from Linda's oncologist at JHH, saying that her cancer was actually the much rarer neuroendocrine carcinoma (NET). She had never needed the chemotherapy, or the port.
I'm not going to get into the specifics of that. Tears flowed. We moved to Baltimore. Linda never saw another medical professional in Richmond. (We did talk to a lawyer, which is more than the lawyer would want me to say.)
But I do want to tell you that every experience at every level with Johns Hopkins has been incredible. I personally believe that the doctor who is treating Linda now might win the Nobel prize in medicine someday. But everyone at JHH down to the security guards and the dudes who park cars is something special. We're in the right place to get Linda well.
New things we know
At JHH, Linda underwent a test I had previously mentioned, called NETSPOT. This test can't be done in Richmond or very many other places in the world, mostly because it it involves gallium-68, which is a radioisotope with a half-life of (coincidentally, not eponymously) 68 minutes.
The NETSPOT scan does several important things. First, it confirms the diagnosis of NET. It also shows you exactly where the neuroendocrine tumors are, head to toe. Wherever they are, they will light up on this form of PET scan. So we were anxious about how exactly Linda would get lit.
Amazingly, Linda's cancer is almost...*almost* completely confined to her liver. There are a couple of tumors in nearby lymph nodes, but that's it. No lung, stomach, brain, or any of that other stuff we were worried about.
Something you should understand is that this change in diagnosis wouldn't have mattered much as little as ten years ago. Until about 2011, metastatic neuroendocrine carcinoma was as much of a death sentence as adenocarcinoma, just via a different mechanism than most cancers.
NET is a cancerous growth of glandular tissues. Glands such as your pituitary make hormones to signal the body's systems. Neuroendocrine tumors themselves act as crazed extra glands that just grew there. They send out hormonal noise that causes havok on the rest of your bod. As healthy tissues try to interpret the noise and do things, the body spins out of homeostasis like a washing machine with a brick thrown in. So the timeline might have been more like 3 to 5 years instead of 6 to 18 months, but Stage IV NET would kill everybody who had it with about the same cold certainty as an adenocarcinoma of unknown primary.
Around ten years ago, though, they tried to calm that noise with a synthetic hormone called octreotide, or sandostatin. It was only meant to treat the syndrome of imbalanced hormones, but they found that in about 30% of patients it actually fought—even beat—the cancer itself. There are some lucky people who had tumors all over their bodies in 2011, but are now cancer free from sandostatin injections only.
So it is quite possible Linda is in that group. Monthly injections of one drug with no side effects could literally be all she needs to beat this!
Yet...it gets better. A lot better. In 2016, a new therapy that springboards off the sandostatin was developed. This is PRRT, a radiotherapy which is essentially sandostatin with nuclear warheads glued on. Where the sandostatin binds to a tumor cell and only a tumor cell, PRRT leaves a deadly little crumb of radioactive material that kills that cell. Then the body flushes it out. It's not risk-free, because radiation. But the final thing that NETSPOT does is tell you with about a 95% certainty whether or not your cancer would respond to PRRT if they tried it.
Well, Linda's scan says she is a likely candidate for PRRT to work.
That means that if we don't luck out with the shots, then we have a therapy that is known to be very, very likely to destroy her cancer. And if it doesn't, then our Chief Warlord's got a backup plan that is so science fiction I can't even call it anything but the third gigantic leap forward on treating this disease. It's real, it's working, it's incredible, and it's there for us if the first two treatments do not take.
What the Luckamancers know
Humans are not the best at processing probabilities. We're good with understanding events, yeah. We're good with imagining scenarios. We can plan for positive and negative outcomes. But what do you do with information that only changes the odds?
Let's say you're in a "Saw" movie. You've been kidnapped by Jigsaw, and you have to play a game.
Here's the game. You will roll two six-sided dice. If you roll boxcars (two sixes), then he will let you go free. If it's anything other than boxcars, then you will get the bad thing. You don't want the bad thing. You must play this game. Saying "I won't play this game" guarantees you will get the bad thing.
So, with fear and dread unlike anything you've ever felt in your life, you pick up those dice and prepare to roll.
"Wait," says Jigsaw. "I've changed the rules. Now rolling boxcars will get you the bad thing. But anything else will get you out."
How do you feel now? In that moment before you roll those dice, things are looking up! Right? Yet...did your feelings change as much as your odds did?
Mathematically, you're all but free. But you can still roll boxcars. The dice are still in your sweaty hand. The dread of rolling wrong is still with you, whatever the odds.
She still has cancer, but we know what to do. I can't describe the difference this makes. But my palms are still sweaty. (Knees weak, mom's spaghetti, et cetty.)
So we get an anniversary. What to do...
We could only think of one thing we wanted to do for our first anniversary.
You guys have been there with us through all of this crap, and with us all along. In August 2014, at the gathering of Erfworld fans at Gencon, I asked Linda to marry me. In August 2017, among Erfworld fans at Worldcon in Helsinki, Linda and I pledged our lives to each other forever.
Now it's August 2018, and we just wanna go bowling.
Because it's basically the most romantic thing ever. I mean I'm not much for love poetry, but the fact remains that roses are red, violets are blue, fried mozzarella and Mountain Dew.
So how about you all meet us at Wayne Webb's Columbus Bowl on Saturday, August 18 at noon?
Comments are on. Please RSVP below. And if you can't make it on such short notice, that's all right. Consider this your notice that our second anniversary is gonna be in Dublin.
Well, Can't make it for your first anniversary or your second. Make your third anniversary in Brisbane and Ill be there :)
Your 10th anniversary though, we will need to rent out an entire city for the celebration.
Rob and Linda: Wishing you a happy anniversary, and a happy anniversary for the next 50+ years.
The last sentence alone demonstrates the changed mood of the newspost quite nicely. I hope you have tons of fun bowling. I won't be there in body (Europe) but I will be there in spirit.
Also, in the Jigsaw example, you do not roll the dice. You throw them at him and hit him critically. In the eyes. Both of them. Because F*** Jigsaw. Also, Fuck Cancer.
This May my father died of liver cancer.
It was about ten days from the day he was admitted untill we got the confirmed diagnosis (his initial symptoms were similar to another condition he had before which threw us all off, but in the end it wouldn't have mattered) and four more days until he died...
So I know how frightening and quick this cancer can be.
I'm glad to hear that the kind Linda has is not quite as bad and wish her the best of luck for making her saving throw!
I am so happy for you guys! Reading your columns on these things has teared me up a bit, and to know that there's not just grasping at straws hope, but real digity-damned hope!
I wish I could go to the bowling thing - hell, I'd probably just walk in, give hugs, and walk out, but still...