"Aaaaand, you are holding"

If you've seen "The Way Way Back," then I'm sure you remember the scene where Nat Faxon keeps a PYT from going down the ramp by asking her for about a minute to "hold."

If not, watch this. I'll hold while you do it.

Also, if you haven't seen "The Way Way Back," go get it. Get it now. Watch it. Watch it again. Have tissues at the ready.

OK. Back to us.

So, we saw the surgeon today, Dr. Song. He and his staff were awesome, until you could tell that he had other things to do and he stopped listening to us, but I get ahead of myself.

First the nurse came in, took all his vitals and history. Then the physician's assistant and speech/swallowing therapist came in. The P.A. took more history and talked more specifically about the cancer. Then he decided he needed to do a bunch of unpleasant things, like sticking a tube up Vic's nostril to deaden the back of his tongue, then stick a camera up that to look inside, only to decide that he should have done all that on the other side. So he stuck another tube up Vic's other nostril to deaden his tongue more, then stuck another camera up his other nostril and root around in there to see what he could see. Vic didn't like this tube-nostril thing.

Then Dr. Song came in. First he reviewed the video from the tube-nostril thing. As the camera progressed through Vic's various body parts, he talked about what we were seeing. That was pretty cool.

Then he decided he needed to stick his finger in Vic's mouth to feel around. He used a numbing spray that he said would taste terrible, like a "funky banana." Vic said it wasn't that terrible. Then he put more numbing stuff on the cancer side of the tongue. He really didn't want Vic to feel anything as he was rooting around in Vic's mouth. Then he did a lot of feeling around, much of which was painful despite all that funky banana numbing. He said he didn't feel anything on the left side, and what he felt on the right was broad (2.5 cm, about an inch) but it didn't seem very deep. When Vic accidentally bit the doctor's finger, the doctor decided to stop feeling around. He said his finger is very important to him. I'm thinking if his finger is so darned important, maybe he should tell patients not to bite it before he puts it in their mouths. But I digress.

Then he reviewed the PET scan. Again, he showed how different things were "lighting up" on the scan. First, the brain, which showed normal activity. Vic made a brain joke, which the doctor did not appreciate, because he had a brain joke of his own ("So, Mrs. Love, he has a brain, and it works.") and thought Vic stole his thunder.

As he went through each layer of the PET scan, he described what it was showing--some inflammation in the back of his neck, noting in the lungs, nothing in the heart, nothing in the liver, nothing in the kidney, nothing in the bladder. We heard all that from Dr. Maymani (the oncologist), but it was nice to hear all that from a second doctor.

Based on what he can see on the PET scan, it's early-stage cancer, probably T1 or T2, for those of you familiar with the tumor grade classification system of cancer. This, too, is good news and was nice to hear.

After all this, Dr. Song started describing the surgery, which he said would remove a portion of the tongue (a "partial glossectomy," for those of you who like to look things up). (Again, this is good news—Dr. Maymani couldn't say whether Dr. Song would even perform the surgery.)

In the drawing below, there is a shaded circle on the right side—this is the cancer. (The shaded circle at the back is where the previous cancer was.) Then there is a solid line around it--this is the part the doctor would remove.

While Vic is still under anesthesia, a pathologist would examine the specimen to determine whether Dr. Song got all the cancer. (This is called having clean margins.) If he did, Dr. Song would close the wound, procedure complete. If not, Dr. Song would remove more of the tongue. This is the area shown by the first dotted line outside of the solid line. The pathologist would examine the specimen again, if it still didn't have clean margins, Dr. Song would remove more. Lather, rinse, repeat, until the margins are clean—that is, all the cancer is gone.

The next step depends on how much of the tongue Dr. Song has to remove. If he removes a bunch, then he'll also perform reconstructive surgery at the same time—taking a bit of flesh and tissue from other parts of the body to use as "filler" for the tongue.

Dr. Song also wants to remove the lymph nodes on the right side of Vic's neck. That's less of a problem—it's just an incision on the neck, remove the lymph nodes, close it back up.

Dr. Song does not believe he would need to take part of the mandible (jaw) as Dr. Maymani suggested—Dr. Song says the mandible doesn't seem to be involved at all. That is great news, because Vic was really worried about that.

Vic may also need radiation after surgery, but the dose would be much smaller.

Vic could do radiation before surgery—try to kill it that way, making surgery unnecessary—but the radiation would be a higher dose (with presumably higher side effects) and the surgery would be more difficult after radiation.

AND FINALLY (for this part of the story), Dr. Song also discussed what it would be like if Vic chose to do nothing. He said he couldn't say how long it would take to kill Vic, and it's a horrible way to die. "I urge you to get treatment," he said. We had talked about "doing nothing" when Vic was initially diagnosed, but Dr. Maymani also said it would be very painful and awful, so we took that option off the table at that point.

Then we asked some questions:

• Best-case scenario—the surgery where he takes the least amount of the tongue and Vic has no radiation after—what does that look like? He'd be in the hospital for three to five days, get some speech and swallow therapy, some follow-up visits, and he'd probably start to feel better in about four weeks.
• Near-worst-case scenario—the surgery where he takes the most amount of the tongue but Vic still has no radiation after—what does that look like? He'd be in the hospital for about a week, but he wouldn't start to feel better for months instead of weeks. He wasn't more specific about how many months.
• As for what happens if you add radiation to the surgery, we won't know until Tuesday, when we see the radiation oncologist Dr. Weeks.
• What effect will the surgery have on Vic's everyday life? None—he'll still be able to drive, walk, eat, swallow (although obvi the last two are with therapy), etc. The only problem would be if he had something go wrong during the surgery, such as a stroke or major cardiac event on the table. Dr. Song really felt that Vic has a good chance at a high quality of life with treatment. (Although his definition of "quality of life" might differ from Vic's.)

This was the point where I feel Dr. Song was starting to get frustrated with us. He kept asking if we had any questions, but he also kept looking at his watch. Vic was trying to ask good questions, but Dr. Song got a little fixated on thinking that Vic wanted to refuse treatment—like Vic was trying to decide whether he was going to even have treatment. And he kept saying "You should really get treatment." But Vic was just trying to get more information about what the recovery would be like so he could make an informed decision about which treatment to get. I get it—there are still so many "what-ifs" that it's hard for Dr. Song to give specifics, but I still feel he wasn't fully listening to Vic.

We finished the round of questions, and Dr. Song left us with Liz, the speech/swallowing therapist. She was wonderful. Here are some of the things we talked about with her:

• The base of the tongue (in the back) is the "powerhouse of swallowing." Dr. Song is not going to touch the back of his tongue, so he really shouldn't have any long-term swallowing problems. Obviously, the early days after surgery could be difficult—but long term, he should go back to normal.
• She was the one who told us that any reconstructions would take place during the initial surgery. I know we were thinking that he'd get the cancer out, and then he'd have to wait a while for reconstruction—but nope. It will all be on the same day. For me, this was more comforting.
• She also said the most common outcome is that the first piece he takes out is enough. It is uncommon that he would have to take a whole lot of the tongue.

The unfortunate thing is that we just can't know what is going to happen until Dr. Song gets in there. An MRI would make all of this more clear, but Vic can't have one because of his defibrillator/pacemaker. So at this point, we just have to make a blind decision.

After we finished with our appointment, we drove back through Denver to get home. (The doctor is in Aurora, people. AURORA.) And I thought it was kind of cruel that, in stop-and-go traffic, we had to follow this:

I mean, at one point, I thought, "I'm just gonna stop the car, run up to the van and ask if they have any cupcakes." But common sense prevailed, and I did not get out of the car on I-70.

So, where are we now? Well, we still need to gather a bit more intel first. Dr. Song wanted us to see Dr. Weeks and Dr. Maymani again, find out what they recommend, now that they have Dr. Song's opinion. We see Dr. Weeks on Tuesday next week, and Dr. Maymani on Wednesday.

So once again, we are in a holding pattern until we get the final tidbits of information and Vic decides precisely what treatment he wants to get.

Thanks for "holding" with us!

P.S. If you are concerned that you might miss a blog post, you can subscribe to the blog or you can ask me to add you to my mailing list, and I'll send you a link to the blog whenever I post one. Just send me an email, a text or a DM on Facebook!

PET Sounds

TL;DR
PET scan shows just one small speck of cancer on Vic's tongue—nothing in the lymph nodes, nothing of significance anywhere else. Next stop: What will the treatment be?

Full blog post
When last we met, I was writing the blog and Vic was taking pictures of birds at our feeder, particularly our beautiful Western Tanagers.

Taking pictures and watching the wildlife that comes to our yard (a wide variety of birds, squirrels, a skunk, a raccoon [or two], a fox and our neighbor's cat) are two of the activities that help Vic feel normal and take his mind off the cancer —even if only for a moment.

OK. So. The PET scan. It went about as expected—it took a long time, but at least it was boring. No need to dwell on that, except for these pictures Vic took while he was there:

You know how people always take pictures of their feet?

The dreaded donut.

We saw the oncologist, Dr. Maymani, Friday. He is a genial fellow who nevertheless uses big words that I continually had to say "Ummm, what does that mean?" Note to all you medical professionals out there: It's OK to use big words, but do please follow-up with "What that means is ..." Thank you.

• The PET uses a "radio-labeled glucose" that is attracted to areas with high activity, such as the brain and the organs—and cancer cells.
• The PET found a teeny-tiny dot on the right side of the tongue 👅near the mandible (jaw). Vic said, "Wow, that cancer really is small. Dr. Maymani said, "That's your brain. The cancer is over here." It's so small that it basically only shows up in one of the many, many views of the PET scan.
• The PET did not find any dots—teeny-tiny or otherwise—in the neck (lymph nodes).

Bottom line of the PET scan, the cancer has not metastasized. For those of you who do not watch Game of Thrones Grey's Anatomy, what that means is (medical professionals: see how I did that?) that the cancer has not spread. This was the absolute best news we could have gotten from the PET, other than "The biopsy was wrong. You don't have cancer. Sorry!" 😉

Now, here's where the news from the PET scan goes a little downhill: Treatment.

• Surgery is Dr. Maymani's preference.
• Pros:
• Surgery removes the cancer. If there is no cancer left, it can't spread.
• If the surgeon (Dr. Song) thinks he got all the cancer, there would likely be no follow-up treatment (radiation and chemo- or immunotherapy). For those of you who remember the last round of treatment, you know why this is a pro.
• Cons:
• Any surgery is risky.
• While emotionally, Vic's heart is big and full, physically his heart is not strong. Surgery will take a toll.
• Even though the tumor is small, Dr. Song may have to take a large area of the tongue or even the jaw to make sure he gets the whole thing. This would require a much more extensive surgery as well as reconstruction later on.
• The medical team (Dr. Song, Dr. Maymani and the radiation oncologist Dr. Weeks) may decide he needs follow-up treatment in addition to the surgery.
• If surgery is not an option, the next best treatment is radiation therapy.
• Pros:
• Radiation kills the cancer. If the cancer is dead, it can't spread.
• Cons:
• Radiation therapy sucks. Just read past entries of this blog.
• He may still have to do chemo. (This would be decided by Dr. Maymani and Dr. Weeks.) Radiation and chemo? That's a low blow.
• If surgery and/or radiation are not options, the next best treatment is chemo.
• Pros:
• Chemo shrinks the tumor (but doesn't kill it, which is a con, obvi).
• There are newer versions of chemo that weren't available last time around and may have fewer side effects.
• Cons:
• Chemotherapy only keeps the cancer at bay for awhile—so it could recur.
• Side effects, side effects, side effects. Even the newer version of chemo will have side effects. The last round of chemo was not great for Vic.
• And if all of the above are not options, the final possibility is immunotherapy.
• Pros:
• Immunotherapy targets your T cells, which boosts your immune system. If it works, you're immune to that cancer for life.
• Cons:
• Immunotherapy doesn't work for everyone.
• You have to have repeat PET scans. Vic doesn't like repeat PET scans.
• More side effects! In this case, immunotherapy also targets other organs and can cause colitis, pneumonitis and other inflammation—all treatable, but still ...

It was a little hard to feel hopeful after this appointment, even though the overall news was great. If the cancer had spread, this would be a very different blog post. But now it's been a couple of days, and we've had more time to process. We definitely are grateful that the cancer has not spread, and we are not putting the cart before the horse (translation: we are waiting to freak out until we know what, exactly, to freak out about).

Next steps: We have an appointment with Dr. Song on Wednesday, May 29. This should give us most of the answers we need to determine what to freak out about decide on a course of treatment. We are "looking forward" to that.

I asked Vic if he wanted to say anything in the blog. He said, "I gave you a whole sentence already when I let you use that joke about my brain."

He's a joker. Also, an excellent photographer. When he can't sleep because he's worried about his cancer, sometimes we are the beneficiaries.

Thanks, as always, for all of your support and love and yadda yadda yadda. 💓

The Waiting Game of Thrones

OK, to be honest, I only threw in "of Thrones" because tonight is the series finale of Game of Thrones. Game of Thrones really doesn't have anything to do with this post.

But as an aside, did you notice no one ever gets cancer on Game of Thrones? They either get murdered or ... nope. That's it. They only get murdered. All in all, not the worst way to die. Unless you cross Cersei, and then it will probably be long and painful.)

So, here we are in the waiting game. As you may remember, before Vic can do anything to treat the cancer, he has to find out more about the cancer, and to do that, Vic needs a PET scan and visits to the doctor. As of the last post, we did not have any of that scheduled. But now we do!

First, we are waiting for the PET scan, which is scheduled for Wednesday, May 22, at 7:30 a.m. (Yawn.) It's a fun affair where you have to drink something super gross tasting, and then you sit and wait in a room that feels a lot like a gas chamber—albeit with a comfortable chair. And there's only gas if you provide it yourself. You can't do anything while you're waiting—you can't play games, read, or even blink. (OK, maybe you can blink.) You can listen to music, but don't even think of tapping your toes! Then they come and get you to lie down in a tube-y thing for, like, a thousand hours and you have to be perfectly still the whole time. Fly lands on your nose? You can't shoo it away. Got an itch? Too bad. Back hurting? Sorry, Charlie.

Next we wait for the visit to the oncologist, which is scheduled for Friday, May 24, at 4:30 p.m. If he gets the results of the PET scan—which he should, because it's his group that did the thing—he should be able to tell us where the cancer is, how much it has spread, and what stage it's in. We might get some treatment options from the oncologist, so this is a big day.

Then we wait once again, this time for the super fancy ear, nose and throat guy, which is scheduled for Wednesday, May 29, at 11 a.m. This is probably the guy who would do the surgery, if that is an option. At this point, we should know everything we need to move forward. I assume we'll also start breathing again after this appointment.

In the meantime, it's life as usual for us. Last week, I went to the Colorado Chocolate Festival and got a little chocolate. (Yeah, I eat my stress—so what?)

Also this week, my friend Margo came over armed with a variety of flowers and greens and planted my outdoor pots. That is probably something I wouldn't have gotten around to this year, but it's something I really love, so I really appreciated this gift.

And that's all the news of the week. Thanks for keeping us in your thoughts and prayers and for sending all your love and light and energy.

(Final note: Vic was unable to contribute to this week's blog post because he was busy taking pictures of Western Tanagers. Stay tuned for those pictures in next week's blog!)

Here we go again

Sooooo, a while ago, Vic had this "thing" on his tongue (underside, on the right). He went to his doctor, who said, "Meh, it's nothing." Gave him some stuff for the pain, pain went away. Pain came back. Doctor said, "Meh, it's nothing." Did some other stuff, pain went away. Pain came back. This went on for a few months, pain always came back. Doctor said, "Let's do a biopsy. It's not cancer, but let's make sure to rule that out." We did that last week and scheduled a follow-up for next week.

What's that you say? "Sure would like to see a picture of that biopsy!" Your wish is my command:

Yesterday, doctor called. "Can we see you tomorrow?" Us, to each other: [side-eye] "That can't be good. Nothing good ever comes of 'Can we see you tomorrow?'"

Today, we saw doctor. Guess what he said? That's right. "It's cancer."

So. We don't know a lot right now, but here's what we do know.

• It's a squamous cell carcinoma (like the last one--but it's not a recurrence of that).
• It doesn't seem too serious (although it will kill him if he doesn't do something about it).
• There is treatment for it (which could be "simple" or ... less "simple," depending on the outcome of the next steps).

And here are next steps:

• Get a PET scan. This will show where cancer cells are hiding. Hoping to have this done next Wednesday (May 15) or the following Wednesday.
• See a fancy schmancy head and neck guy in Denver. (Dr. John Song—anybody have any experience with him?)
• Depending on what the PET scan shows, Vic could have surgery on his tongue, or on his tongue and his neck (the most likely combo.) They then send "stuff" (the medical term) to pathology. Then the next step depends on the path results.
• Could be that they get it all. No more treatment. Life goes on.
• Could be that they don't get it all, and they need to do some follow-up treatment—some immunotherapy (which is the latest thing and is having some pretty interesting results), or perhaps chemo and radiation.

And that is actually the sugar-coated version. Surgery for someone with his heart condition is always a risk. He may have already met his lifetime quota for chemo and radiation. (who knew there was a quota?) And even if he didn't ... well ... his last chemo and radiation wasn't exactly a walk in the park, so he's not really interested in taking another hike.

This has been a shit year, for those of you keeping score. My stepbrother passed away in January at the ripe old age of 57. (Cancer, of course. Fucking cancer.) Vic was on death's doorstep with pneumonia. My mom broke her arm and had some rocky weeks where her early-stage dementia was getting the better of her. The day she had surgery for her arm, my dad passed away. Things were just starting to look up and I started thinking that maybe the rest of 2019 wouldn't be so bad. That's what I get for being optimistic.

Just kidding—you know me. Glass half full. So as always, we are trying to remain positive and strong in the face of [whisper] the cancer [whisper]. But all thoughts, prayers, healing energy, dog, cat, baby and cute kid pictures are welcome.