The spinning platelets

TL;DR: Saw the oncologist. He wasn't too concerned about Vic's low platelets. Will monitor.

We saw the oncologist (Dr. Maymani) Friday (June 21) about Vic's platelets. He said the platelets had dropped again—to 53. Mmmm. Not great.

He said the diagnosis was "probable ITP" (ITP = immune thrombocytopenia). He said ITP is a diagnosis of exclusion, meaning that "we look at everything else, and if they come up negative, we say "probably ITP."

The treatment for ITP is generally steroids, but Dr. Maymani said if there is no bleeding from the nose, mouth or other ... you know ... orifices, they don't usually treat it. That said, if Vic has to have another surgery, Dr. Maymani said they could either do some sort of treatment or he can have another infusion.

Dr. Maymani also addressed the pathology report. He concurred that, if they decide something more needs to be done, surgery is the gold standard. Anything else (such as radiation or chemo and radiation instead of surgery) would be subpar. As I've said before, it's nice when doctors who have a vested interest in one treatment option (in this case, chemo) steer you toward a different treatment option. It makes you trust them more, and it puts you more at ease to get the other treatment.

Dr. Maymani looked at Vic's tongue and said it looked well-healed. This is also good to hear, because it hasn't even been two weeks since the surgery, and Vic is having a smooth recovery. (Not that it's been an easy recovery, but at least it's been fairly quick.) This also gives us more hope that if he has to have more surgery, maybe it will also go smoothly and he won't spend a year suffering, as he did with the first cancer.

We will see Dr. Maymani again in a week to check the platelet count. By then, we should have more information about the next treatment steps, and if surgery is indicated, Dr. Maymani will start Vic on a treatment to increase the platelets, if needed.

Dr. Maymani assured us that, even though there are a lot of things going on right now, he has contingency plans for all of them. You might say he's spinning a lot of plates.

I don't even want to tell you the ridiculous amount of time I spent
trying to find a free image or clip art of a man spinning plates just so
I could justify the title of this post. Nor do I want to tell you how long
I tried to Photoshop this image to put different words on the plates.
Just pretend the lady is Dr. Maymani, and the plates say stuff like
"steroids" and "Rituximab" and "immunoglobulin."

While I was searching for a man spinning plates, I remembered a video of a woman balancing ever-increasingly large stick-like things. You know—that video. I don't even want to tell you the ridiculous amount of time I spent trying to find that video. I couldn't figure out why I was so obsessed with locating this video until it hit me that one of the things that is really challenging me right now is finding balance. Well, I found the video, and I watched it. It was so soothing, and it just helped me finish off the day feeling serene and calm.

I hope it does the same for you.

Have a great week, everyone!

Somewhere, over the rainbow

TL;DR: They probably didn't get all the cancer, back to the waiting game to find out the best course of option.

Greetings, blogsters!

Yesterday (Wednesday) was the day we had our first follow-up appointment with the surgeon. Well, not with the surgeon, because he's in, like, Prague or something. In Prague, while my husband has cancer. I mean, sure, at least one of his patients has cancer every day of the year, and if he waited until none of his patients had cancer to go on vacation, he'd never go on vacation. Still, I thought we were special. Turns out we're just patients. 😉

But I digress. Today we met with Jeannie Doyle, Dr. Song's physician assistant. Boy oh boy, was she awesome! Just super friendly and helpful and sweet. That's gotta come in really handy when she [SPOILER ALERT!] delivers bad news.

First we saw Anabel, the nurse. Anabel didn't seem to remember us, even though she just saw us three weeks ago and has only seen about 150 patients since then. But then Vic said something funny, as he does, and Anabel said, "Oh, I remember you!" And we said, "Of course you do." And she laughed. She then joked around with us as she reviewed Vic's history and took his vital signs. It was a great start to the appointment.

Then Jeannie came in. We took a cotton to her (young people, look it up) immediately—she was so personable and upbeat. She said she thought his speech was excellent, and then she asked him what he thought of his speech. I thought this was a great question, because doctors always evaluate your progress based on milestones, but people evaluate their progress on how things are going in their everyday lives, like whether they can eat or talk. You know, little stuff like that. Vic said he felt pretty good about his speech.

Moving on to the pathology report, she said there were no surprises: squamous cell carcinoma, 1.6 cm wide, 4.5 mm deep, staged at T2. Then this genial, lovely woman dropped the hammer. There was "some tumor present at the deep margin." Now, this could mean that they went EXACTLY deep enough, that the last of the cancer is in the part they excised, and there are no cancer cells left on the tongue.

But the more likely scenario is that they didn't go deep enough, and there is still a little cancer left. And as she said, even two cancer cells left are two too many.

Exhale deeply.

So the next steps are these:

• First, we wait. At least we've had a lot of practice at that.
• There is a "tumor board" that consists of the surgical staff, the radiation oncologist, the medical oncologist, and the pathologist. They meet next Monday, June 24, to discuss what they think the best option is.
• It is highly unlikely that the outcome of this meeting will be "let's do nothing."
• It is fairly likely that they will want to do an additional surgery on his tongue—which actually shouldn't be too bad. He may need a little reconstruction, but not as much as they had initially considered. The surgery isn't too scary. It's just a bummer to have to recovery from the same surgery twice.
• If they do an additional surgery, they will also likely do a neck dissection to remove the lymph nodes. This was never going to be the bad surgery, but still. Another surgery. Ugh.
• They may consider radiation instead of surgery, which Vic is not in love with. (Not that he's in love with the surgery.)
• And worst of all, they may consider radiation in addition to surgery because the cancer is stage 2—and chemo could be part of that. This would be the worst-case scenario for Vic.

Jeannie said she would call on Monday—probably in the morning. The tumor board meets at 7 a.m. (Really? Who schedules a meeting at 7 a.m. on a Monday? I hope they at least get food—nothing could be worse than a roomful of early-Monday-morning hangry doctors deciding your fate.)

Jeannie will help us coordinate all the appointments that come after that—another meeting with the surgeon and consultations with the radiation oncologist and the medical oncologist. This will probably happen the first week in July.

(And yes, Margeaux, I did tell Jeannie that we didn't want surgery in July because that's when all the new medical students start, and Jeannie said, "Don't worry. Dr. Song will be the one performing the surgery, with a fifth-year resident by his side." You gotta love that Jeannie.)

We had really gotten our hopes up. Vic's recovery hasn't been horrible. His worst fears were not realized—he woke up from surgery, he didn't have to have a breathing tube or a feeding tube, he doesn't have any problems swallowing, his speech is getting better every day, eating is getting easier. (Jeannie was impressed with what he had already started eating—including turkey, cheesecake and regular cake.) So we started feeling a little cocky, a little hope-y. Then this. To say we were disappointed is a severe understatement.

"But what about the platelets?" I hear you cry. Well, after a frustrating week of going back and forth with the oncologist, I finally was able to get them to make an appointment for us by threatening a bad Yelp review. (Just kidding—I went all Shirley MacLaine from Terms of Endearment on them. "GIVE MY HUSBAND THE APPOINTMENT!!!!!") (Just kidding—I just said "I've been trying to get an appointment for a week. What is it going to take to make that happen? If I have to walk down to Aurora to get the paperwork myself, I will do it.") And that did the trick.

So we will get started on figuring out the platelet situation tomorrow (Friday).

Last week, I did a super mushy part at the end of the blog for our family and friends.

Now, I'd like to take a super mushy moment here to give a shout out to my company. When something is going wrong in your life, you don't need one more thing coming down on you. "Gosh, I'm sorry, Patty, but we're gonna need you to come to the office more often." or "We're gonna need you to take less sick time." or "We're gonna need you to work more traditional hours."

I don't know how people who work full-time are able to care for themselves or a loved one in situations like this without support from their office, so I am very very very grateful that I work for a company that has given me multiple days of bereavement leave, many sick days, many flexible hours,  many extra work-at-home days, and just multitudes of emotional support from the highest level to people I barely even know. I thank all of them from the bottom of my heart.

Now for the weekly picture. I was wracking my brain trying to decide what to show you. We took a picture of Vic's tongue with the sutures and everything, but I thought some of you might be reading this over dinner, so I nixed that idea. I have a great picture of Bella, but I put that on the Facebook, so most of you have already seen that. But then I suddenly got an inspiration while texting with a friend of ours, Squeak. (It's a nickname.) Something made me think about how I feel like we've just been standing under a dark cloud these past few weeks, and yesterday the clouds opened up and it started pouring. But in the words of the great Jim Croce, "nobody ever had a rainbow baby, until he had the rain." (Click to enlarge—it's worth the click!)

It's so rare to see a full rainbow arc, and rarer still to see a rainbow in the west in the morning—but the stars aligned yesterday morning when Vic was putting out treats for the critters who visit our yard, and he was able to snap this shot.

So I guess that's the message I'd like to leave you with. Yes, it's pouring right now. But eventually, we will have a rainbow.

We're on our way home?

Good morning, devoted readers!

After what we assume was a successful surgery yesterday, the doctor who came in to do rounds this morning said "I have to talk to [Dr. Song], but I don't see why you can't go home today."'

But I get ahead of myself.

Just a quick recap of yesterday:

• We came to the hospital at 10 a.m. to do bloodwork. The platelets were even lower than before. 😐
• Katie, our awesome nurse practitioner, ordered some more tests to be done on his bloodwork so that when Vic sees the hematologist next week, they'll already have some of the tests they need to start figuring out why his platelets are low,
• We went up to surgery check-in around 11, where we waited, and waited, and waited, and waited. They finally called us back around 4, where we found out that Dr. Song didn't really want to do too much surgery because of the low platelet issue. This was the most devastating part of the day, because we really wanted him to do as much as possible in one day, but ...
• ... it ended up being OK, because the surgery Dr. Song did do went really well. He took off all the visible cancer and sutured him up. No skin grafts, no neck surgery, etc., which means ...
• ... easier recovery, which means ...
• ... he may get to go home today! (More on that later.)

Vic is glad to have the cancer out, and even though it may not be all out (we'll know in about a week), the majority is out, and that's a relief. He was also quite concerned about his swallowing and his speech, but both are great. He sounds a LITTLE drunk (hee hee), but that will get better as he recovers.

This morning, Dr. Gonzalez came in (he works hand-in-hand with Dr. Song) with a bunch of fresh-faced medical students for rounds. Here's the recap of that:

• He looked at Vic's tongue, said it looked great. No bleeding, which is really great, given the low platelets.
• He repeated what Dr. Song said, which was that they took an area of the tongue that he thought would provide clear margins. (Dr. Song's concern was that he definitely went wide enough but wasn't sure he went deep enough, but the pathology would show that.)
• He said if it the margins were clear, maybe Vic would be done with the surgery. (Dr. Song also said that--maybe he won't even need to have the lymph nodes out.)
• He said the platelets were up to 97 after yesterday's infusion. This is excellent. (But we'll still need to find out why the platelets are so low.)
• He said that Vic's speech was fantastic, given that he'd just had surgery on his tongue, and he was swallowing just fine.
• The last thing he said was "I have to talk to the boss [Dr. Song], but I don't see any reason you can't go home today." This was very unexpected. Dr. Song said yesterday that Vic would only have to be in the hospital a day or two, but we expected "two." Vic is over the moon--so I sure hope Dr. Song agrees! It's almost worse to find out that you might be able to go home and then have to wait all day to find out. But still, HOME!!!

Next steps:

• Follow-up with Dr. Song's office--probably next week.
• Find out the results of the pathology--probably next week.
• Get an appointment with a hematologist to take care of that pesky platelet problem--probably next week. (I, too, was a little excited with the "go home" news that I forgot to ask about all of this. BUT I have now written it down, and rest assured that we will not leave the hospital until we know what the plan is.)

Now, let's see, what pictures do I have for you today?

This is post-surgery with the ladies in the PACU:

And this is us in pre-op, me with my Game of Thrones sign: What do we say to the god of death? Not today. That made a few people laugh, and the nurse even asked if he could keep the sign in their area. (I put this second so that a new picture would pop up on Facebook, hahaha.)

They want you to get up and around, so here's Vic walking the runway and also being silly:

(NOTE: He is only pretending to speak gibberish at the end.)

[begin really super mushy part]

Each and every one of you--whether you are a Facebook/blog "lurker" or someone who posts a comment or someone who clicks "like" or "love" or someone who texts or emails or someone who sends vibes, thoughts, energy, prayers and the like or someone who weeds or plants flowers or sends treats or offers any kind of help we might need--has lifted me up these past few weeks. You have enabled me to be positive and strong and resilient. You have been there for me so I could be there for Vic. You have been my cheerleaders, my shoulders, my rocks. My friends and my family, the people I love most in the world. I cherish you all.

[end really super mushy part]

Houston, we have a problem—maybe

TL;DR: We're still going to the hospital tomorrow (Monday) and still planning to have surgery.

Full post:

We went to the hospital on Thursday for a presurgery workup. It was not noteworthy, except for the fact that they took blood.

Our wonderful nurse practitioner, Katie, said someone would call us Friday with a surgery time, but if they didn't, we should call between 2 p.m. and 5 p.m., and she gave us a number to call.

When do you think I called? (Go ahead, think about it. I'll wait.)

Right. 2:00 p.m. I didn't even wait for 2:01.

The woman who answered the phone said the nurses were looking at the schedule now and would get back to us between 2:30 p.m. and 4 p.m. If you ever feel like time is moving too fast, I suggest waiting for a hospital to call you back. Time stops.

Around 3:30, Katie called—but not about the surgery. About Vic's platelets. They're low. Normal range is 150–400. Vic's were ... 53.

Subtopic: About platelets
Platelets are tiny blood cells that help your body form clots to stop bleeding.

Can you imagine what happens if your platelets are low? You bleed. If you're having surgery, bleeding is not desirable. Low platelets can scuttle a surgery. This was not good news.

Long story short (it's already too long), Katie ran around on a Friday afternoon trying to find out when we were on the schedule, what Dr. Song wanted to do about the low platelets, and generally just trying to get us squared away. We love Katie. She finally reached Dr. Song, who is determined to do the surgery. Vic's surgery wasn't going to be until the afternoon anyway, so they decided we would go to the hospital early, recheck the platelets, and if they are still low, they'll give Vic an infusion of platelets and check again. If they are still low, they can do an infusion during surgery.

No one made it sound like a very big deal, so that's nice.

SO! Surgery is still scheduled for tomorrow, but no time has been set yet. Just keep us in your thoughts all day. Cuz what else did you have to do with your brain on a Monday?

And what did we do this week?

Well, Vic laid with Bella in the sun.

We went to Summer Lobster at The Palm on Thursday. If Vic isn't going to be able to eat decent food for weeks—or months—we're having lobster! (No, I know, this is not a picture of lobster. It's just me, dressed up in anticipation of the lobster. But now that I mention it, I wish I had taken a picture of the lobster.)

And, yes, more eating. I received a box with these goodies in it from my peeps at work. What was so meaningful about this was that people often send flowers when you're in the hospital. Fine by me—I love flowers! But again, if you're not going to be able to eat decent food for weeks or months, getting treats before you go into the hospital is just next-level awesome. Thank you, Ogilvy family!

And that's it for today! Thank you, as always, for your continued blah blah blah all the mushy stuff. 💖

We have liftoff!

TL;DR: Vic has chosen surgery! Surgery will be on Monday, June 10, somewhere in Aurora. (That Anschutz Medical Campus is huge, and they haven't told us yet exactly where yet—or for that matter, exactly what time. So, more details to come.)

Full story:

Today, we visited the radiation oncologist, Dr. Weeks. I know what you're thinking: "But at the end of your last very very very very long blog post, you said you were meeting with her on Tuesday!" That is true, but this morning, she said she had an opening today, so there.

Dr. Weeks is the radiation oncologist Vic had last time he had cancer, so it was "nice" to see her again.

Without so much as a how-dee-do, she said she agreed that surgery was the best first option. She said it would be more efficacious (having the power to produce a desired effect, I looked it up) and safer, given that he's already had full dose radiation. She said radiation would not be as effective as surgery.

We did talk about what it would look like if we had to do radiation after, and it's not great, so we're really hoping for clean margins on surgery with no follow-up. (That said, we still have an appointment with the oncologist, who may want to do chemo- or immunotherapy after surgery regardless of the margins. We'll find out more about that tomorrow (if we can get the Wednesday appointment rescheduled) or Wednesday (if not).

We asked Dr. Weeks if she knew Dr. Song. She did, and she loves him. She says there are four "head-and-neck guys" in Longmont who do surgery—and they all know their limitations. When they come upon a complex case like Vic's, they all call Dr. Song. And then she said, "He's the one I would go to if I needed this procedure." You can't ask for a better recommendation.

If you made it to the end of last week's very very very very long blog post, you know that we weren't in love with Dr. Song at the end of the appointment, so this really put our minds at ease. As we've said many a time, you don't need a nice surgeon. You need an expert surgeon. And Dr. Song is the expert. Patients all over the state come just to see him.

The last thing she said to us today was "Hopefully, you won't need to see me again." We like her a lot, but we couldn't agree more.

OK. So. Next steps:

• See Dr. Maymani Tuesday or Wednesday
• Get "presurgeried" on Thursday—this involves a visit with the anesthesiologist as well as ... I don't know. The stuff you usually do for presurgery—list of meds, what not to eat and drink the day before, what time to be there, what to expect, yadda yadda yadda.
• Surgery!

Super happy to be moving forward and getting the surgery scheduled so quickly (hint: start the process before you've even decided what you want—you can always cancel!) and in June (for those of you who do not know: Don't get sick in July. As my niece says, "With every new July comes new doctors, fresh out of medical school with a license to practice medicine.")

Now it's all on Vic's shoulders—he's the one who has to undergo the surgery and recovery. So take any thoughts/prayers/love/light/healing energy/etc. that you were sending to both of us and only send them to him. He needs all he can get!

I'll close today with a picture of Vic having one of his favorite desserts: pineapple upside-down cake. This delicious one courtesy of our niece Margeaux, who had us over for dinner last week. :-)