It’s definitely been that.

It’s been one of those weeks when it’s much easier to list all the bad things than strive to find the good.

Still…

• I will celebrate the fact that another student has stepped up to play a lead role in our musical, since the original actor suffered a football injury that required surgery and will be out indefinitely (we have 11 rehearsals before we open).
• I will delight in my great good fortune to have my sister and her family taking care of everything when I am at work or when I take Michael to Cleveland.
• I will try to find the good in no improvement on Opdivo after the fourth treatment. Breathing treatments are providing the Thriller with some limited relief; I will clap for that.
• I will spend as much time as I can giving our precious Pax hugs and kisses, since his motor and brain functions are in steady decline, and we believe the death struggle will soon begin.
• I will celebrate my friends, who have held me up here at home, and across miles of country and ocean.
• I will hug my colleagues for helping me through the worst, and for giving Michael their best in the way of prayer and other support. If you ever want to feel humbled, be a caregiver surrounded by beautiful, compassionate people.

And I hug YOU, dear fiends, for your constant and unwavering words of encouragement and love. Hey, RtB’s 10th birthday is coming up in February; I smell a celebration there, too — and you will all get the prezzies.

#teamthriller

It was good to get yesterday out of the way. The Thriller is understandably weary (Opdivo side effect), and we discussed his getting a port in his chest for the treatments, instead of being needle-mined every two weeks. I’d post a photo of his arms, but I’m assuming most of you are reading this over morning coffee/breakfast, so…

Opdivo day started rather inauspiciously, but snarly traffic at 9:30 a.m. into Cleveland followed by a 3,000-year wait in the outer rooms while seemingly dozens of people who arrived after us were summoned sort of put me in a snippity mood (that wasn’t the case, of course, but still). It wasn’t my finest hour. I made it about me instead of him. I got to read the news on my phone while he endured the endless poking and jabbing.

I had asked our clinical trial nurse if I could speak to Dr. Velcheti when I got up there, and she responded that the best thing might be to just call him, so I’d decided to do that. When we got back to the exam room, intending to see the trial nurse and physician assistant only, Kayla appeared and summoned me into the hallway. She took me to a room, and there stood Dr. V, Erin the PA, and another doctor, ready to hear my questions and take their time with me. I almost got two sentences out before I bawled like the fool that I am.

The object of my love and hate

I asked some questions that had been on my mind and the minds of Michael’s children, and got some good feedback. The Amazing Velcheti showed me some comparative scans, and told me that if the Opdivo didn’t work, there were other options to consider, which made me happy. It didn’t solve the ugly-crying issue, but I went back to the exam room with some renewed hope and resolve. Of course, the Thriller immediately said, “Why are you crying??” Oh, I dunno. Sometimes, what can’t be spoken with your mouth falls out your eyes. That, and I’m a big fat crybaby.

I hate that you have to get poison to destroy poison. I also hate that the poison they give you doesn’t always kill the poison that’s in you. Still, I’m grateful he has Opdivo as an option, and that he’s tolerating it bravely and resolutely.

As the Thriller is wont to say: Onward through the fog.

Sidebar: the stage floor was painted yesterday. Looks nice!

Much love today,

#teamthriller

Not overwhelmed or underwhelmed, but somewhere in between.

Another pothole in the Thriller’s path appeared over the weekend, and landed him back in the hospital. It seems that since he started the Opdivo, he’s coughed/choked more. Of course, this isn’t a complete surprise, as Opdivo’s side effects include worsening cough, and even worsening of the cancer for a time.

But something in the way he was coughing, combined with his weakness and complete loss of appetite, suggested there might be other chicanery at work behind the scenes. As it turned out, there was.

A CT scan revealed that part of his right lung had collapsed. The delicate, sponge-like material of the middle lobe couldn’t withstand the weight of all the secretions this disease (and emphysema) produces. We asked the ER doc what he thought, and he said he wouldn’t advise going home. He called Dr. Velcheti and reached his colleague, who said “bring him in.” So, after an interminable wait for an open bed, they transported him to the Cleveland Clinic, and that’s where he is this morning.

Last night was rough; he got very little sleep, apparently, and he’s hearing more wheezing in his lungs. We meet Dr. Stevenson (pulmonologist) at 11 this morning to discuss the path forward. I hope I can bring the Thriller home with a nebulizer and some meds and get through this thing so it doesn’t upset the Opdivo schedule. Last night before I left, we were told by the nursing staff that Opdivo treatments were on hold till they got the pneumonia issue sorted, because it could be fatal at this stage. I understand that, and I’m glad they are once again exercising caution.

So the whelmed factor is not a deal breaker. In fact, it makes us more determined to sailor through this and get on the other side so the Opdivo can happen on Wednesday.

That’s the update from the high seas today. Happy Monday, fiends! I hope all is well with you.

#teamthriller

Move over, MJ. Here’s the Thriller’s new anthem:

The vocal cord repair surgery didn’t happen. Turns out both of his vocal cords are paralyzed — not just the one. So if the injection pushed one cord towards the center, it would have cut off half his air. If both were pushed to the center without his being able to retract them, well…yeah. Not so good.

However — we still have three remaining Opdivo treatments that will hopefully lessen the cancer’s buildup around the nerves that control his vocal folds.

We don’t lose hope around here, y’know. He gets knocked down, but he gets up again. You are never gonna keep him down.

Aaand now you’re singing it.

Love to you all once again,

#teamthriller

I don’t know whether he called in a favor, pulled rank, traded baseball cards or flashed that million-dollar smile, but somehow, Dr. V. turned the 2nd of October into this coming Thursday.

The Thriller will have medialization laryngoplasty next week, either by injection or implant, to hopefully alleviate the suffering he’s endured on account of his left vocal fold paralysis. (Be sure to check out the before-and-after video clips at the bottom of the page.)

We don’t know what this will mean in the long run, but our hope is that he will finally be able to cough and clear his throat properly so he can regain some energy and return to his daily routine. As it stands now, he has very little appetite and must spend a large part of the day confined, as moving around stirs up congestion he’s unable to clear.

As has happened on a couple of occasions during this odyssey, we’ll be frustrated and disappointed, only to be pushed to the surface again by a hopeful turn of events. This definitely qualifies as one of those moments. Thumbs up to the Amazing Velcheti, who used his magic to somehow make a hole in Dr. Bryson’s busy surgery schedule, and especially to you, fiends, for holding us up in thought, words and prayer.

Much love,

#teamthriller   #prayforhouston