Ready for the long haul

I know, I know, I slacked off last week and didn't do an update, so now you get four blog posts for the price of one!

But first, the TL;DR: Follow-up surgery is scheduled for August 1. It will be bigger than the last one, with a longer recovery. Sounds kinda awful. And we are working on resolving the platelet issue.

Tumor board

When last we met, we were waiting on the tumor board. Well, they met, and—shocker!—they agreed that the margins weren't clear and Vic needed ... something. Probably surgery, maybe surgery and something else, probably not just something else. The amazing Jeannie said they wanted us to meet with the entire team—Dr. Song and the speech therapist, Liz (she was so wonderful the first time we met her); Dr. Jessica McDermott, the medical oncologist; and Dr. Ryan Lanning, the radiation oncologist—and she set those appointments up for yesterday (July 2).

Dr. Song, the surgeon, and Liz, the speech therapist

First up, Dr. Song and Liz. Dr. Song reviewed the results of the pathology, which we already knew from talking to Jeannie and Dr. Maymani. He recommended surgery, as a surgeon would. That said, he did justify that decision by saying that the tumor was "P16 negative," meaning that it wasn't caused by HPV (a virus) and wouldn't respond as well to radiation and/or chemo alone. He said he had talked to Dr. Maymani, who'd told him that Vic indicated he was receptive to surgery in their last appointment, and Dr. Song asked whether that was still true. Vic said yes, but asked "What are we talking about?"

Here's where the story gets grim, so watch this video of cute puppies first. I can wait.

Did you watch it? Did you? Because if you didn't, go back and do it now. You'll need this dose of cuteness to get through the rest of this post.

So here's what we're talking about. As you may remember, the tumor is deep. So to get it all, they'll have to go deep, too. And to get clear margins, they'll probably have to go about 2 centimeters. (What do you mean, "I didn't learn the metric system in school"? Fine. It's about ¾ of an inch.) Now, go to a mirror and look at your tongue. Go on. I'll wait. Did you happen to notice how thick your tongue is? Yeah, it's about ¾ of an inch. So they are expecting to take up to half of his tongue. This is called a hemiglossectomy.

Now imagine trying to talk with only half of your tongue. (Go ahead. Imagine it. I'll wait.) So the next step will be to reconstruct his tongue with tissue from his wrist. This will help with speech and swallowing, and it will also help the tongue feel more normal inside the mouth.

Fun side note: Liz said the weirdest thing that might happen from the reconstruction is that the tissue from the wrist could grow hair. Inside his mouth. Gross, right?

After that (or maybe before—what am I, a surgeon? I don't know the order in which they do things!), they will do a neck dissection, which is taking out the lymph nodes. I swear before they only talked about doing the right side, but now they are talking about doing the right and the left sides. Ugh. (Still, the neck dissection is the least difficult part of the surgery.

All in all, it will be about a 10-hour operation, so he'll need a tracheostomy.

Behold the Pocket T.O.M., a fun way to tell someone how
a tracheostomy works. That's Liz, the speech therapist,
pointing to where the trach tube goes.

A tracheostomy provides an air passage to help people breathe when the usual route for breathing is obstructed or impaired. In this case, they're operating in the mouth, so they don't want to put anything down his throat if he needs help breathing. He will have this trach tube in probably the whole time he's in the hospital, and will likely go home with it. He could have it for weeks or even months. This is not welcome news.

They also don't want to put anything in his mouth for several days following surgery, which means he'll have to have a feeding tube through his nose or directly into his stomach. Those of you who were with us the last time around know how excited he was to have a feeding tube, so this is spectacular news. (If they don't have sarcasm where you come from, please reread that last sentence with your sarcasm hat on.)

And he'll have some speaking and swallowing issues after surgery. The tongue will be swollen—and the flap starts out much bigger than it ends up (it shrinks—who knew?)—so it will be extremely hard to talk at first, but his speech should get back to ... if not normal, then new normal. They have operated on salesmen who made their living over the phone and were able to get them back to work, so I think he'll eventually be able to speak fairly well. And again, the back of the tongue is the swallowing powerhouse, and they aren't touching the back of the tongue, so he should eventually be able to swallow. That said, the tongue won't work the same, so eating will probably be a challenge for a while.

Altogether, he'll probably be in the hospital for around two weeks. (And whatever you just said or thought, trust me—I said or thought it too!)

I did ask whether these were all worst-case scenarios, and Dr. Song said, "Worst-case in some cases, but I'd say realistic." Sigh.

Liz gave him some "prehab" swallowing exercises to help prepare him for the surgery, which is tentatively scheduled for August 1. (It may come earlier; it won't be later. Apparently, there are many people who are sicker than Vic who need to get on the schedule. I guess that's some small comfort.)

Once Vic said he would do the surgery, Dr. Song said we didn't need to see radiation or medical oncology, so we just went back to Vic's sister and brother-in-law's (where Bella was). Vic took a little nap, Bella and I took a little walk, and then we went to The Capital Grille for dinner. If he's not going to be eating for weeks or months, we are going to have all our good food now!

Dr. Maymani, the oncologist

We saw Dr. Maymani today, July 3. The purpose of this visit was to figure out what we're going to do about those pesky platelets—and what is causing them to be pesky in the first place.

They've ruled out several things already: it's not a reaction to a new medication, it's not related to some illness, and there's no platelet disorder. It could be ITP, which is the immune system destroying the platelets, or it could be a primary disorder of the bone marrow, such as leukemia.

There are a variety of treatments, but the three Dr. Maymani discussed today—steroids, intravenous immunoglobulin (IVIG) and rituximab—if they work, we have an answer: it's immune related.

Dr. Maymani has clearly given our case a lot of thought. He and Dr. Song had a lengthy conversation and came up with a treatment plan, but as Dr. Maymani reviewed Vic's PET scan and his medical notes—and when he realized the surgery was a month away—he decided he wanted to go a different way.

So the current plan is to do a short course of steroids, get another blood test next Monday, and review the platelets on Tuesday with Dr. Maymani. If the platelets have improved, Dr. Maymani will probably start him on the rituximab to prepare for surgery. (This is administered by IV once a week, and Vic could get as many as four treatments in before the surgery.)

Dr. Reynolds, the heart doctor

We also saw Dr. Reynolds today. The purpose of this visit was to update Dr. Reynolds on all the goings-on, talk to him about the new drugs Dr. Maymani wants to prescribe and see if any of them has any adverse effects on Vic's heart (although in the appointment, I could only ask "Is that heart bad?" as if I were Frankenstein's monster or something), and to ask Dr. Reynolds if he could clear Vic for the gigantic surgery. Indeed, none of the new medications would be "heart bad," and Dr. Reynolds said he would contact Dr. Song and approve Vic for the surgery.

Let me 'splain. No, there is too much. Let me sum up.

So that's where we are now. In a way, we're back to the waiting game as we wait for surgery. A couple of things I didn't mention above in case you're the kind of person who skims the blog and then reads the ending:

• I asked Dr. Maymani about the prognosis of this whole shebang. He said it really depends on the pathology from the second surgery, but the goal of the surgery is to remove the rest of the cancer. If they are able to do that, then it's considered a cure. (It's not like when you do radiation or chemo, where you can say there's a 25 percent chance of a five-year survival. If there's no cancer left after surgery, you're "cured" of this cancer. It doesn't mean you won't get cancer again—but this cancer won't come back and get you.)
• I also mentioned to Dr. Maymani that we had forgotten to ask about the possibility of chemo or radiation after surgery. He said the likelihood is low. These were probably the brightest spots of the day.

So how are we? We don't really know. We're sad, we're angry, we're tired, we're frustrated, sometimes one at a time, sometimes all at once, sometimes we have the same feelings, sometimes we feel different. But we have each other, and we're both trying our best to just be there for each other and not drive each other crazy. All in all, just another Wednesday.

I'll leave you with this image this week:

What is that blue thing? you ask. Well, it's Wags. Or more precisely, her ashes. Again, if you were with us on this last journey, you know that Wags's profession is "Nurse." So all during Vic's recovery, she was plastered up against him wherever he was. I think she was more curative than the notChemo and the radiation. Now Bella is a good dog, but she loves me more than she loves Vic. So when Vic is napping, Bella is usually off on her own or with me. I was working, so I couldn't be there with him, so he toddled on over to his office, pulled Waggy off the shelf, and put her next to him while he was sleeping. It was too cute for words.

Have a safe and happy Independence Day, everyone. More than 9,000 people were treated for fireworks-related injuries last year, and don't even get me started on grill injuries. OK, get me started—July is the peak month for grill fires, and an average of 19,000 people per year go to emergency rooms because of injuries involving grills. Be careful out there!