We went to Nina’s surgeon yesterday in Durham. He’s a nice guy, as surgeons go. Affable, friendly, maybe a bit of a personality, but definitely a straight shooter when it comes to patient care. He told us much of what we expected to hear: the additional tumor they discovered means that she is looking at some form or another of mastectomy (apparently there are many options). His recommendation was that she have a single mastectomy on the right side, since that breast is the only one with any indication of malignancy. He also said the surgery is much less extensive and the recovery period shorter if only one breast is removed. On the other hand, removing both breasts may have some added benefit in terms of preventing future cancers, but it is a marginal reduction in risk.
He also talked about reconstruction. Specifically, he said that she ought not to even start thinking about reconstruction yet, because of the uncertainty about her oncological situation. The second tumor didn’t even show up on the initial scans, which he called very strange. Indeed, he didn’t just say it was strange, he used the word “occult.” As in, “that tumor is really occult, it was just hiding back there.” Because one thing you want to invoke in any diagnostic setting is the black arts.
Apart from telling us that Nina’s second tumor is shrouded in hermetic mystery and probably tattooed with pentagrams and adorned with jet black anise-scented candles, he also reiterated what all her doctors have told us, which is that no one will really know anything until they remove the tissue and do a full pathology on the tumors. Sometimes, it seems, they expect to find extensive tumors and find little or none. Other times they anticipate clear tissue and find extensive cancer. If they do the surgery and find that the cancer has spread, they have to do a much more extensive removal of lymph nodes (they call it a dissection, which is nice) and if they find metastasis or that the tumor is bigger than anticipated (the cutoff is about 5 cm) they will have to do radiation even with the mastectomy. If they irradiate, it would likely destroy or damage the reconstructed area.
So there’s no point in starting reconstruction until we really know what is happening. Which means that Nina will have to have more extensive surgery (the mastectomy instead of the lumpectomy), will still potentially have to have radiation, and will be living with one breast—a minor issue medically but surely one of the oddest and most disfiguring “treatments” a person can have—for a substantial amount of time.
After we discussed all that, Nina asked the surgeon if the fact that the tumor is larger than they thought and that there is this other tumor to boot meant that the chemo isn’t working. He hesitated to give an answer. “I’ll let your oncologist answer that,” he said, “but I’ll give you AN answer. My answer. I’d say it hasn’t worked as well as we would like.”
Now, it’s not like he said “from what I’ve seen, you really better get your affairs in order,” or “it’s a miracle you made it here from Greensboro today for this visit.” All things considered, he was very positive. But “it hasn’t worked as well as we’d like” is not a phrase you ever want to hear your cancer doctor (or for that matter the doctor treating your athlete’s foot) say. Because he’s not the oncologist, and we really don’t know anything until after the surgery when they can put it all under the microscope and give us the results, we have to take any kind of input at this point with a huge grain of salt. But HOLY SHIT, it’s not working as well as we’d like?!! That was kind of a show stopper.
And the best part was that the discussion with the surgeon was just the start of Nina’s Friday. Actually, it took a turn for the better at first. We got home from Duke, I lit a fire in our fire pit, which we just placed strategically in our new patio, next to our new deck that Nina’s dad built for us. It was a perfect night, just cool enough for a fire, but warm enough to be outside. Nina has been conceiving and concocting this deck/patio combo for months and months, and she’d not only realized her concept, she had also spent the past couple weeks planting flowers and plants all around it, spiffing the whole thing up so much I hardly recognized our backyard. She had a glass of wine. I had a tasty seltzer. The fire was perfect. Perfect flames licking up to the clear night sky. They looked like cartoon flames stenciled on the side of someone’s hot rod. It was lovely.
But then the “WTF is going on oh hey I’ve got cancer joyride” continued, naturally, when she broke out in hives all over her body, literally head to toe. Her face swelled, as did her hands and feet.
So again: HOLY SHIT. Those who know us well or have been around us this past year will recall that I have a chronic hive condition that is only kept in check with monthly injections plus a strict regimen of antihistamines. What Nina had looked very much like me during my worst stages of hives, before we got it under control. And that was awful. Just completely awful. I was miserable. And I didn’t have effing cancer. I will remind you that, as she is breaking out all over in hives and swelling rapidly, she’s also bald from chemo, and only just starting to not feel like absolute physical crap from her last round of treatment. So I’m not exaggerating when I say that the universe was really gilding the cancer lily. I’d also note that seeing her break out in hives in what appeared to be a bizarre mirror image of my condition transposed onto her body did make me question whether occult forces were in fact at work in our lives. Perhaps the Dark Lord was angry that I was no longer worshiping at the altar of anaphylaxis? Punishing us for a lack of recent sacrificial offerings?
Regardless of the cause, we had to give her Benadryl and, when that didn’t work, we called her oncologist who recommended steroids and more Benadryl. That brought the swelling down and beat back the hives. She’s still a little hivey even as I write. Which seems unequivocally unfair and annoying, yet somehow small potatoes compared to what she’s really dealing with.
The various diagnoses that Nina’s had so far have all been a lot to process. Just her having cancer at all is a lot to process, but at first it seemed like a relatively small tumor, a relatively simple surgery. But it was triple negative, so not exactly a low stress situation. And then its two cancers not just one and, hey, they’re quite large, so bonus mastectomy! And, oh by the way just for good measure: hives, because, you know, sadism is actually the guiding force in the universe. Maybe a deal with the devil wouldn’t be such a bad idea? I mean we’re already totally dependent on big pharma and the insurance people, how much worse could things get?
Anyhow, barring some other strange development, or some other occult phenomenon, we’re just here trying to process the latest unreasonableness and wait for the rest of the information about the second tumor to come back. Hey maybe we’ll break out the Ouija board and get them early!