Only 6 Days Later

Holy cow. 

On Monday we talked to an immunologist about the chemo rash. Then we got a call from a scheduler for an 8:15am appointment with a neuro-opthalmologist at the hospital the next day.

The neuro-opthalmologists were super attentive / vigilant, and pressed the urgency of mrguy's eye issue. They upped his brain pressure medication and mentioned working in coordination with our primary oncologist to determine how to protect mrguy's eyes during chemo.

On Wednesday we met at 8:15am with an oncologist cardiologist at the hospital. Since mrguy doesn't have any comorbidities the Dr. says he's on the team in case he's needed, but doesn't expect to be.

And we got some labs taken while we were in the neighborhood on Wednesday. We were home by 11am, as I recall, and I worked the rest of the day.

Today mrguy had a PET scan (at the hospital at 8:15am!) and while he was in the tube, so to speak, the neuro-opthalmologist scheduled 3 steroid infusions: today at 3pm, after the 1pm additional eye test, one on Saturday and one on Sunday.

For real. Today's no problem, since we're already here. I'm actually in the neurology infusion department lobby at the moment. But Saturday (5:30pm) and Sunday (6pm) are a bit of a bear, and give us no time off. 

But wait! There's more. While we were waiting for the 1pm eye test today, a scheduler left a voicemail asking us to meet with the Neurology Stroke department for a consultation with a nurse practitioner. It took 5 phone calls to figure out who called and who they wanted us to meet with. The initial caller didn't really leave enough info for us to figure it out without the help of others.

I'm glad that mrguy isn't a lady or a child, because that rules out our hearing from pediatrics or gynecology. We are hearing from everyone else.

I am super happy with the level of care we're getting, but there is so much of it and they're keeping us really busy.

Happy things: we saw the most gorgeous rainbow, close up, on the way down here. We saw white, yellow and purple lupine blooming. We saved half of our Mr. Pickles sandwiches from yesterday and ate them for lunch. The eye clinic bathroom has nice tile and smells like coconut.

And mrguy and I both appreciated the font in the elevator. That's what I like in a man -- the ability to appreciate a good font.

Not Today

We think that mrguy will be released tomorrow. Yay!

In the spirit of full disclosure, he had a crazy poo this morning and because he had the crazy poo the nurses said that they wanted to have him produce another one so they could test it for bugs.

This has happened to him more than once while hospitalized, and with the same result. He had been crapping his little heart out and they wanted to make sure that he didn't have an infection prior to his doing chemo, so they admitted him and tested the poo for every bug I've ever heard of. 

As in that case, when mrguy finally produced his poo after lunch today they took one look at it and pronounced it magnificent. It was of such fine shape and consistency that they could eyeball it and tell that he was not ill.

I think it was too late in the day for them to release him, so he comes home tomorrow.

May his colloidal waste continue to be firm.

Two Months

This is the information I sent to friends and family. To it I will add the following:
He had a lumbar tap which confirmed high brain pressure. They're changing up the blood thinners and trying to figure out which ones work best. He thought he was going home today but had some unexpected poop accident and now they want to test his poop for bugs. So I think I am going to have lunch with my sister instead of picking him up. He's bummed. 

Happy 2 Month Illness-aversary!

 

Summary (cause this will be a long one)

Mrguy is back in the hospital getting some stuff checked out. I am home with the kitties. It's all good.

 

Detail

Papilledema

Last week we learned about the eye problem Pappiledema (see below or you may google), which is caused by pressure in the brain. We went to the hospital for a head MRI on Tuesday evening at the request of our neurologist, and he called yesterday to kindly ask us to go to the ER  because mrguy has a small blood clot in his brain. So we drove to the hospital again. It was a gorgeous day, a gorgeous drive. We are trying to stay positive.

 

What Now?

Doctors of various disciplines are trying to figure out how to treat the clot and the underlying problem, which may be that the anticoagulant he's on might not be working as effectively as it needs to. This, in turn, may be causing the eye problems because the clot could be leaning on an important vessel. Anyhoo, he had a whole room of neurologists looking at him at one point today (students, doctors).

 

What's Good About It?

On the plus side, we're glad that we went to the ER at the hospital because he has had a lot of attention from doctors of all disciplines: neurology, hematology, oncology. All of the ologies! And that this clot was found through testing and not a stroke. Right? He'll probably be in the hospital for the next few days. In the meantime he is being seen by all.

 

Lumbar Tap

Later today they are going to do a lumbar tap (aka spinal tap). They'll take a needle into his spine and draw out some fluid. This will (hopefully) allow them to reduce some intracranial pressure (eye happiness!) and test the pressure of the fluid, which might give them some answers about what to do next.

 

Clotting

And also in the meantime they're trying to figure out which anticoagulant is doing the best job, and how his blood is clotting. I had no idea that you could test how quickly your blood coagulates. Weird.

 

His chemo is postponed until we figure this out.

God Laughed

So you know -- the last time I sent out good news there was an immediate change of situation. 

And we repeated that this morning. We were all excited about going to get chemo and how good mrguy is feeling, and how we're getting our bearings in this journey. And we were almost at our local clinic to get our labs for chemo tomorrow when the neurologist called to say that mrguy has "more" blood clots in his brain. Good news is that you want to hear this from a doctor and not because you had a stroke. 

After not getting the labs, we came home, set up the cats' meds and I made a video showing the precious family where all the cat stuff is becuase they might be their servers tonight. Then we grabbed our capture bag, etc. and got back in the car.

On the upside it was a beautiful drive. I got to spend time with mrguy. I brought some food so I don't starve...and a longer computer cord.

We came to the ER, and are getting tests. Hopefully they'll figure out what's going on with his brain and we'll deal with it and move on again. The only side effect he's having is the blurred vision that took us to the opthalmologist last week.