WRITTEN BY JOHN.
We just got back from Paris. Paris is a wonderful city for just about anyone to visit, but I have a particular yen for Paris. French culture speaks to me. That’s why Nina took me there for my birthday. And it’s why I’m tempted to wax poetic here about the City of Lights.
But Nina says we need a low-key update, something that gets right to the facts. As an attorney, I know how to economize my prose, skip the decorative elements of style and cut right to the heart of the matter. A lean, not to say parsimonious, approach to informing you, the readers, about the latest stretch we’ve been through. It reminds me of something Tacitus is supposed to have said to Pliny the Younger about being concise in oratory as well as in prose. Did you know that Paris was already a settlement in Roman times? They called it Lutetia of the Parisii, after the Parisii Tribe who lived there. But I digress…
The truth is, I’m not sure what to say mostly because I think the latest news is cautiously, haltingly, and probably temporarily. . . good?
Nina had a whole mess of scans when we returned from our trip to Paris. The results of those scans (mostly a CT and bone scan) were thoroughly positive. There are some small spots they are watching, but there is no clear active disease in her body that anyone can see. That doesn’t mean there is no cancer present. Her scans were clear after her mastectomy, too, and she developed this latest tumor while still in active treatment. But the only thing anyone can discern right now is: no cancer to be seen.
As The Queen of breast cancer docs said when told us these results: What this is is not terrible news.
In the exam room, we both took this more or less in stride, in the way we’d become accustomed. That is to say, we were both a little undone but not devastated either. Peering into an uncertain future, realizing we had to take things one doctor visit at a time, etc.
But a funny thing happened about 24 hours after we got the news: we realized it was actually good news. It’s not definitive good news, not “you’re cured” type of news. Indeed, when we asked what it would mean if the cancer recurred at the next scan, the Oncologist said, more or less “if it’s back in your internal organs, the median survival rate is 26 months. But if you would have asked me in December what your outlook is I would have said something equally bleak, and now there’s no active disease. So take that for what it’s worth.”
In some ways, this makes the treatment path a little murkier. She’s not sick enough to qualify for any clinical studies. She’ll have scans again in eight weeks. We will follow the protocol of observation (which is of course not just observation).
Dr. Cavanaugh put her on a regimen of Zometa (zoledronic acid), an intravenous drug to promote bone strength. It has some less than pleasant side effects (flu-like symptoms for about 24 hours are the most obvious, but the long term effects read like a parody of an FDA warning: “may cause crippling disintegration of most internal organs, colorectal boils, severe internal bleeding, locusts, frogs, rivers of blood, and death…”). But she only has to take the drug every four weeks, she won’t lose her hair, and it doesn’t cause any of the nausea of chemotherapy drugs. The point is to preventively make her bones stronger to help avoid another “pathological fracture” akin to what happened in her back. But they think the drug may also have some ancillary beneficial effects.
The doctor also recommended doing an oral chemo agent. It’s a drug that is less potent than the traditional chemo that NER had before and acts in a different way, interfering with folate metabolism instead of just destroying the DNA of the reproducing cells. Kind of like Obama’s approach to ISIS as compared to that of Ted Cruz. She said she was in favor of doing this drug, but mostly because it’s available, not overly toxic, and she likes to be as aggressive as she can be, particularly with younger patients. But she also told us that probably 9/10 oncologists would say skip that drug, wait to do chemo until there is a recurrence and you know what you are dealing with. She told us there is no data that suggests this drug does anything particular for Nina’s type of cancer, and nothing that indicates it will increase her chances of survival. So Nina decided against it, and KB validated that choice.
The doctor also validated another choice we were falteringly trying to make: she told us that Nina could (should, even!) engage with any number of complementary medical approaches, including a supplement we found out about not long ago through our sister-in-law Amelia called MSM, but also including: acupuncture, herbal remedies to stimulate the immune system, exercise, etc. She even brought up Relaxation Jon again. She was wide open to this type of thing and even suggested a practitioner she trusts for her own complementary medical needs. This was a real anxiety relief because: 1. We were overwhelmed by the sheer number of possible complementary remedies and were really happy to have a recommendation for a guide through the holistic wilderness; and 2. We like having the doctor’s stamp of approval (or at least I do, but I’m a craven approval craver).
So, in the spirit of Tacitus, I shall concisely summarize the latest in our Annals of Nina’s Cancer: 1. Scans as of now are clear, no active disease; 2. Nina is on a once every four weeks regimen of Zometa, the bone strengthening drug; 3. There will be another set of scans in approximately 8 weeks, which will be, according to KB, VERY important, because there will have been that much more time passed since radiation and that much more chance for cancer to grow if it’s going to grow; 4. There is no other plan at the moment. We are now living scan to scan; 5. Nina is going to start taking some supplements and explore herbal and other complementary remedies to help boost her immune system; 6. If the disease does come back, Nina will most likely qualify for some type of immunotherapy clinical trial.
The lesson that we’ve been slowly learning, if you can call it that, is Nina’s disease, whatever its true, hidden, post-modern narrative arc, is not likely to follow any of the predictive measures the medical community has. It has successfully confounded thus far pretty much everything the oncologist thought it would do, up to and including not being visibly present anyplace in her body only weeks after having spread in a nasty way from the breast where it originated to Nina’s spine. That’s a pleasant surprise, but still unpredictable. So maybe unpredictable can be OK, too. And maybe we just need to live with unpredictable, because that’s what we’ve got.