Rituxan Flu

The side effects from the infusions are worse this time.

Or maybe they're not actually worse, they're just worse relative to how I'm feeling the rest of the time.

Last time, I felt really lousy the day after my infusion, maybe the day after that as well.  But then it was done.  Of course, I was super tired and unable to do much of anything anyway.  So going from Rituxan-super-extra-tired to just every day extra tired counted as a full recovery.

Now I have to go from Rituxan-super-extra-tired to pretty much able to do anything as long as I'm careful to no totally overdo it (as a side note, I'm totally over doing it every Monday at work doing a really awesome program that takes a lot of spoons).

I was really hoping that I could get through this fast and easy.  I figured, I could  get the infusion on Wednesday, feel terrible Thursday, and maybe Friday, and go back to work on Saturday.

So far it's been more like: Infusion Wednesday, dead tired Thursday, tired, nauseous, and headachey Friday and Saturday.  Fine Sunday.

It's annoying because I'm missing more work than I wanted to.  And I can't even really get anything done when I'm stuck at home.

But what can you do?

It sucks right now, but it's just temporary.  I'll feel better when it's done.  It's just frustrating.  That's all.

I'm going to head to bed now and sleep off the headache and fatigue from this week's treatment.  Two down, two to go.

Update! From the Infusion Center

Yep.  I'm at the infusion center getting Rituxan again.

So the last time I updated, I was about to see my rheumatologist because my nose and eye symptoms had gotten pretty bad again.

My rheumatologist basically said that he could go either way as far as needing to treat the GPA again. If there was a congress of 100 in his head making all his decisions, they would pretty much be 51 in favor, 49 against.  So he ordered some blood tests to see if that made any difference.

The blood tests all came back normal. Annoyingly normal. Because normal didn't give us any information at all, really.  If they were bad, if one or another level was super high, we could look at that and say "yeah, we definitely need to get some treatments going."  But they were normal.

Ultimately, my rheumatologist decided that it was better to do another round of infusions.  I didn't have any major bad reactions last time, and it's better to take care of this earlier rather than later so it doesn't go and close off my throat again.  Or, who knows, maybe this time it would go into my lungs again, or my kidneys.  If we can stop it when it's just in my nose, that's pretty great.

So I'm in the infusion center now getting my first infusion.  It's a different infusion center this time.  Last time I was able to go to the big medical center just a block or so away from my house.  This time I'm at the university hospital.  Their infusion center is not nearly as nice.  Apparently they're getting a new one, but it won't be done until 2020.

I'm all hooked up.
Tube coming out of my hand. Fun times.

Anyway, Here I am.  My veins were stubborn today and it took three tries to get my IV started.  Apparently, that is mostly due to the coffee I had this morning.  Next week I will skip the coffee.

Some of you may be wondering why I haven't kept this blog updated with all the details of this little flare.

I think the biggest reason is that I don't have to process what's happening as much this time.  I started this for two reasons: so I wouldn't have to keep explaining to everyone what is going on with me, and so I could work through my issues by writing about it.

This time I'm not as sick, and I'm taking everything pretty much in stride.  It's easier because it's not disrupting my life as much.  The last couple weeks I've been very tired and I've missed a little work, but I can generally recover my spoons with a day of much naps.  So, it's bad, but not too bad.

I am probably going to also need surgery.   The good(?) news is that if I can get it in before January, I won't have to pay for it. The infusions are expensive enough to take care of the max out-of-pocket amount for the year, so surgery will be totally covered. Yay for free surgery?

How's that for a silver lining?

I think that's all I have to say for now.  I think I might nap.  Or play Pokemon Go.  There are lots of pokemon at the hospital.

State of the Cassie Address: Many Months Later

Hi!

It's been a while.

You may have been assuming that I haven't updated this blog because everything has been going really well.  And you would be pretty much correct* in that assumption.

Since surgery, life has mostly gotten back to normal.  It's amazing how much of a difference having an open air-way makes.

I mean, it's seems obvious to say that breathing is important, but seriously. Breathing makes a huge difference!

A few months after my surgery, I was at an event at our big NBA stadium.  I was sitting with some friends near the floor,  so there were a couple stories worth of stair to go up to reach the level where concessions and restrooms are.  At one point, I ran up to the top and then realized that I had just run up several stairs and I wasn't winded.  I very nearly cried.

Since then, I've been taking full advantage of these newly available oxygen levels.   I was all set to run a 5K in October, but badly sprained my ankle two weeks before.

So, no 5K, but I've been doing other things.  Last week I went hiking for the first time in years. It was amazing.

I really didn't know how much I was limiting myself and what I was doing until all of a sudden I could do things again.

*But...

But...

Ok, so, it hasn't all been super great.

 My throat is in great shape.  And I am miles beyond where I was this time last year.

But my nose wasn't 100% fixed.  I mean, we didn't really expect it to be.

And the tearing in my eye came back.  So I went to my eye doctor and she was like "Go see your nose doctor because it might be nose stuff."

So I went and saw my nose doctor.  He stuck a scope up my nose and couldn't see the site of the eye surgery.  My middle turbinate was very inflamed and blocking off the opening to my tear duct.  He prescribed an anti-inflammatory nasal rinse with the hope that we could get the inflammation under control.  If that did work, he said, surgery.

So in the two months we gave that rinse to work, things have gotten worse.

It's always hard to tell with my nose if it's actually worse or not.  Changes in the weather, lots of dust, weird smells, all sorts of things make for bad nose days. But nose aside, the tearing is all back in my right eye and now I have some tearing in my left eye as well.

When things in that area are bad, it's probably an indication that things are bad.

So I'm seeing my rheumatologist tomorrow (lucky me got an appointment super fast). I might be ok, but I'm not optimistic.

Even if the Big Bad isn't doing its thing, my nose and possibly my eyes will need another surgery. It's just a question of whether that happens after a bout of GPA treatment or not.

Oops

Yesterday morning, right before I left for work, I blew my nose and the stent came out of my eye.

I felt a slight tug on my eyelid.  When I looked at the Kleenex (that is something I do because the color of the stuff that comes out of my nose tells me how healthy my nose is) I saw a few inches of silicon tubing.

It was supposed to stay in my eye for another 7 weeks.

So I called Eye Doctor, left a message, got a call back from her office saying “yeah, you definitely need to come in today.”

So I had a surprise appointment with my eye doctor yesterday. 

Everything’s ok. Mostly.

She did the needle-in-the-eye thing again to make sure that stuff could drain out of the new drainage opening – the one she created when she sliced up my face.  Some puss came out at first, but then it started draining really well.

Obviously, it would have been better if the stent had stayed in, and having it come out prematurely decreases the chances of the surgery failing.  I skimmed a couple medical articles on the subject though and according to those, premature stent removal decreased the success rate of the surgery from 93% to 90%, so it’s not really a big deal, probably.

Eye Doctor prescribed some anti-biotic/steroid eye drops which should help keep the new hole in my tear duct from scarring shut.  That was the stent’s job.  But now the stent is gone.

So that was fun.

The silver lining of that is that with the tube out of my eye, I am not tearing very much at all.  Today I’m even wearing eye shadow and it hasn’t washed away yet!

Also, she thinks the scar on my face is healing really well.  She was very happy about that.  

I can breathe!

Ok having the plastic bits out of my nose is amazing.

I can actually breathe. Through my nose. Easily. 

I feel like the inside of my nose is huge now; so much air can get through. It's really an incredible feeling. 

I keep expecting to not be able to take a breath through my nose, but then I can and it's weird and wonderful. 

It reminds me of the time I drove an ex boyfriend home after he had laser eye surgery. He kept saying things like "the trees have leaves! Obviously I knew they have leaves, but now I can actually see them!" And he was so excited and I was just like "um, yeah, that's pretty normal for those of us with eyes that work." I'm goin. Through that same thing but with my nose. 

And the plastic bits, by the way, were kind of huge. Picture a standard guitar pick. Now take the fat end and extend it about 1/2 inch. That's pretty much the shape of them. The plastic bits were probably thinner than a guitar pick, but still way bigger than you would expect to fit in a person's nose. 

But the point is, I can BREATHE!

Post-Op

Ok, so it's taken me a while to post about my surgery.  Two weeks. And then some.

Before surgery.  I thought it would be good to have a
pre-op picture for reference.

I think the reason I haven't posted is that I don't really have much to say about it.  I went over the procedures in ....  wait.... maybe I didn't go over everything all in one post.  Well.  I guess I'll do that now.

So, two ENTs and an Ophthamologist walk into a bar  an operating room.

The first ENT (Throat Doc) went and mucked about with my throat.  He used a laser to cut the scar tissue bridge that was going across part of my throat, and then cut into the band of scar tissue around the side of my throat.  Then he stuck a balloon down my throat, inflated it, and that was that. There are pictures if you click on the links.  I was really excited to have pictures, but not everybody likes to look at medical imagery.  Anyway, once Throat Doctor was done with all that, there was space in my throat to intubate so the other surgeons could surgerize.

The second ENT (Nose Doc) then roto-rooted my sinuses.  He went in and cut a band or two of scar tissue that was going from septum to turbinate (What's a turbinate? click to find out).  He also did a little digging around my sinuses - just under my eyes they were narrowed to about 1 mm.  The hope is that when the swelling is done, that opening will be around 3 mm.  He then sewed bits of plastic (or maybe they're sillocone) to my septum.  The purpose of those is to stop another band from connecting turbinate to septum.  Those are getting cut out later today - more on that later.

Finally, the ophthamologist took her turn. I pretty much went over her part in my eye post from a while back. Basically, she poked a hole in the side of my nose to create a new drainage path for my tears.  She also put stents in my eye, you can kind of see them even - I tried to take a picture but it didn't work, but if you see me in person, I'll be happy to point them out if you want.

So all that took about 4 hours.  I was feeling pretty good when I woke up.  I spent very little time in the recovery room before they moved me into the post-op room.  At that point, they finally let me eat (pudding) and drink (water... it was really good water... I was very thirsty).  Here's a picture of me there:

Immediately post-op.  There hadn't been enough time for things to start swelling.

Then it was time to go home.  I spent the next couple days kind of out of it and in pain.  Not a lot of pain though, really. My nose hurt more than anything else.  My throat was a little sore the day after, but then was fine.  I could already tell a difference in how much air I was able to get through my throat - very exciting.

My nose and eye got a little poofy.  I spent a lot of time with ice on my face.  I watched The Last Ship, Stranger Things, and a lot of Gilmore Girls.

Day after

Two days after. Eye was super swollen. Also, for some
reason my phone (with which I took all pictures) flipped
this one so it's all mirror-imagey.

By Sunday, the swelling had mostly gone down.  There was a little discoloration around my eye, as you can see in the picture if you look carefully, but that's it.  I fully expected to have a nice shiner, but all I got was some swelling and a yellowish tinge.  Good for me!

Sunday after (so 5 days)

I went back to work for half a day last Tuesday - a day sooner than my planned best-case.  Granted, I didn't work my full schedule last week, but neither would you if you had recently been punched in the face with a scalpel.  This week I've been pretty much back to business as usual.  I am taking it a little easy - and I'm still not supposed to lift anything heavier than 10 lbs.

Last Friday I had a follow up appointment with Eye Doctor.  She says the incision is looking really good and she thinks it will likely disappear as long as I make an effort to keep it from getting sun-bleached.  That means sunscreen, sunglasses, and fabulously large straw hats.  You have never seen such a glamorous recovery process.

As for everything concerning my eye that is not a scar - it all looks good.  I still have excellent vision, the pressure in my eye is good (having that tested in a weird experience btw), the eye tubes are positioned well.  My eye is actually a little dry, so I have eye drops for that.  I do still have a little bit of tearing, but that will probably go away when they take the stents out in 3 months.  It makes sense that having little tubes in my tear ducts is blocking some of the tears.  Also, the tearing is 300 times better than it was before the surgery, so I declare this one a success!

As I mentioned earlier, I am getting the stents cut out of my nose today.  I'm not really looking forward to the actual taking out part, but I'm definitely ready to get rid of the things.  I'm also glad to have a chance to check in with my doctor.  As of right now, I don't really feel like I'm any less congested than before.  I guess there's probably still some swelling going on in my nose, and the junk attached to my septum is maybe getting in the way of some normal nose clearing stuff.  I'd like to get a clear timeline of when I should expect to notice a difference, if I am going to notice a difference.

Now, 2 weeks post op.  In some lights the incision scar is barely
noticeable at all.

Also, the last couple days I've had a bit of a cough, and have even lost my voice a little.  Even though this is Nose Doctor I'm seeing, he is an ENT and the T is for throat.  Plus the cough could be just as much related to post-nasal drainage or something as it is to throat issues.  And I like Nose Doctor a lot more than Throat Doctor.

So, I guess that's about it.  The healing process is, well, proceeding.  It's all going about how I expected.  For the most part I'm feeling pretty good about it all.