Yeah, no sarcasm there. Thanks for the Obamacare and the institution of out-of-pocket maximums. Two nivolomab treatments, plus a handful (less that $100) of assorted small prescription charges, and I’d hit my out-of-pocket max for in-network expenses by February 2nd this year. Note: I hit that even before the first of my two hospital stays.
*faints*
Insurance has approved me for the colitis treatment. I should get my first dose on Wednesday. Amazing how just knowing relief is potentially coming can make you feel a little less shitty.
Pun totally intended.
This means back-to-back trips to the hospital next week, but I can deal. Just make this stop so I can sleep again and get back on the Kill Betty Juice.
The Summary.
I haven’t done one of these in a while. I’m tired, so I’m not feeling creative. It’s the colon’s fault.
The Details.
Saw my doctor and my surgeon yesterday. Saw the GI doctor today. That’s a lot of doctors in little days, two trips to Boston in two days, and my colon is waking me up multiple times a night. I need sleep.
We are all in agreement (well, not the surgeon since this is out of his area of expertise, but the rest of us) that the prednisone isn’t cutting it. So I’m going to be switched to the real hard core colitis-busting drug. Don’t ask me to name it, never mind spell it, because I’m too tired.
It has to be administered via IV (yay, more trips to Boston because they won’t do it locally!), but it should take care of the problem. Most likely after only one dose. Three is the most anyone in my situation has needed, and they will schedule me for three doses to be prepared.
It’s super potent so it comes with a lot of potent risks, including TB, lymphoma, and… melanoma. Yeah, we are aware of the irony. I’ve been assured that those risks are very minor in my situation; they tend to only occur after prolonged used of the drug. (Since it’s used to treat Crohn’s disease, for example, most people who need it take it for years, and that’s where the risk comes in.)
And the drugs make me more okay with that than I should be.
After two weeks on lower than the usually-given doses of prednisone, I’m feeling much better. My liver is mostly back to normal too. Unfortunately, my intestines are not. Because the lower dose hasn’t cleared up the colitis, on Tuesday my doctor decided it was time to bump me up to the full dose. (He was being optimistic and hoped I could get away without it.)
So, as of yesterday, I’m steroided-up, plus taking pills to control the side effects of that (pills to decrease the strength of my stomach acid and massive antibiotics). Hopefully, this will do the trick quickly.
In the meantime, I’m very calm and chill about all of this. Apparently, I’m among the minority of people who have an unusual reaction to prednisone. For most people, it winds them up, heightens anxiety, and provides lots of energy. For me? I’m super mellow, unfazed by pretty much everything to the point where I don’t feel safe driving long distances or in heavy traffic. It’s rather a pity because I was warned prednisone would make me want to scrub the house from top to bottom, and I was looking forward to the motivation. Instead, I’m smiling at dust bunnies and thinking how cute they are. This is probably better for my mental health because otherwise I’d be stressed about the colitis.
It took 2.5 hours to get to Boston this morning (rush hour) and another 1.5 to get back. All so I could spend 15 minutes with my surgeon. But hey, he’s such a nice guy; it’s a pleasant 15 minutes.
Also, he said reassuring things. For instance, my ear looks good still. No sign of an infection or the unhealthy/irritated skin I had prior to surgery. He did clean out some gunk, the result of the grafted skin not working quite like normal ear skin, and that helped the clogged sensation a bit. According to him, this is around the time when my nerves should be healing and reconnecting, so it would be completely typical to feel pain and possibly other weird sensations as my brain tries to make sense of the confusing signals the nerves are sending. Even some small skin debris could feel unpleasant.
He also felt up my face and neck, as docs tend to to do. The nodule over my ear that he believed was tumor is still gone, and apparently I had a hard lump under my ear too that he described as suspicious. That was there a few weeks but is now gone as well.
So while this certainly isn’t conclusive, it’s reassuring. And probably worth having needed to get up at 4:30 a.m. to get to my appointment. Now I want a nap before my second doctor appointment of the day…
First the bad side. It appears side effects have caught up to me. At least, I think that’s what’s happening. Starting Tuesday, my throat (glands) have felt sore, and I’ve been experiencing quite a bit of joint pain. My eyes are also bloodshot for no apparent reason (i.e., they aren’t itchy or irritated, so it doesn’t seem to be allergies, and my vision isn’t affected).
I did get some blood work done yesterday, and my local doc felt up my glands and lymph nodes and declared them not swollen. So it looks like this is just pain and it might be here to stay. Oncologist’s office doesn’t seem too concerned as long as my eyes don’t get worse.
Now the good side. My face is on the move again! It’s not fully back to normal yet, but I can smile, blink my left eye, and eat without pain among other things. I thought I’d started noticing improvement last week, but it was so subtle I doubted myself. But it can’t be doubted anymore. Blinking is blinking, and I could definitely NOT blink my left eye last week.
So the question becomes: what does that mean? I don’t know. Everything I’ve read about Bell’s Palsy suggests it takes much longer to go away. If it’s the cancer, like my oncologist believed, then it’s possible my recovery is a sign the treatment is working. He did say it was possible I could start seeing improvement in as fast as a week, which this was.
Is it time to get excited? Probably not, but it’s nice to have something finally go right. And the ability to smile about it.
I can’t laugh. Or smile really. Well, I can but it feels weird and probably looks weirder. But I still have to make fun of my situation because it’s either that or mindless rage, and mindless rage will only get you so far. So here I go.
Top 6 Reasons Why Half A Working Face Isn’t All Bad
6. I should be able to get half off any Botox injections.
5. My jaw hurts if I speak too much so I now have a socially acceptable reason to not talk to people.
4. Everyday can be Talk Like a Pirate Day when you have a good excuse for wearing an eye patch.
3. Since I can now raise one eyebrow independently of the other, I could be the main character in a YA novel.
2. Not even Alan Rickman can sneer as well as I do.
1. Everyday I suffer, I know I’m still alive.
But you already knew that.
I played Stump the Surgeon yesterday. Oncologist’s office made me an appointment with the surgeon because of my leaking, and he (surgeon) checked me out yesterday. He agreed with my oncologist that it’s Betty causing my paralysis, but he can’t find any sign of infection. Of course not.
So basically he has no obvious explanation for why my ear started leaking other than that it looks irritated from the cancer. (Not that this would necessarily cause leaking.) He also has no explanation for why my pain spiked then vanished, or why a lump on the side of my head has shrunk.
Wild card: the lump really was cancer and not an infection like I thought, and the treatment attacked it viciously. It’s not impossible–the treatment can work extremely quickly in some people–but it’s a very, very long shot.
He warned me that even if Betty is causing the paralysis, and if the treatment works, there’s no guarantee that my face will return to normal on its own. (Oncologist said he thought it would. But then, no one seems capable of agreeing on anything lately.) I also have some antibiotic drops just in case there is a minor infection somewhere.
And that’s it. Ugh.
I just heard from my oncologist, and he disagrees with the neurologist who told me it was most likely Bell’s Palsy. My doc is 99% certain the paralysis is being caused by Betty because there’s a spot sitting near the nerve.
I’m willing to tolerate the paralysis (and occasional face spasm) for now, so we’re going ahead with the treatment as planned. If it works, it should start alleviating the symptoms in a few weeks. If it doesn’t seem to be doing that, doc might pull me off and go with the BRAF drugs.
I’m also going to be evaluated by a neuro oncologist tomorrow who will be able to help monitor the situation.
I had plans last night. Plans that involved tasty food and drinks, and Netflix with the husband. But Betty (or something, more on that in a moment) also had plans. And those won.
While making dinner, I tried to laugh at something my husband said and the left side of my mouth didn’t move. I blinked with surprise, and my left eye didn’t shut all the way. Having some familiarity with the ER, and convinced I wasn’t in imminent danger of dying, we ate dinner before leaving.
We got to the local ER around 8:30 p.m. where the staff ruled out a stroke. Unfortunately, we had to wait for them to confer with the on-call oncologist at my doctor’s office too. She wanted us to be cautious and have my MRI from last week examined by one of their hospital’s neurologists. A whole lot of back-and-forthing apparently ensued. Around 1:30 a.m., my husband went home to sleep while I had to wait for an ambulance to drive me to Boston. (I had to be transported by ambulance, which I kind of understand but which I also find ridiculous.)
The ambulance picked me up around 2:30 a.m. Nothing feels as silly as being strapped to a stretcher when the part of your body that’s actually malfunctioning is free to continue malfunctioning. Fortunately, my ambulance crew was entertaining. Plus, there’s not a lot of traffic going into Boston at that time of night.
I got to the new ER around 3:30 a.m. and was subjected to the same tests that my local hospital, as well as the ambulance crew, did. I must have squeezed a dozen people’s fingers before the dawn broke. Then I was taken to an area of the ER called Fast Track, which meant that I finally saw the neurologist a speedy 6 hours after arrival.
End result: it’s most likely not a stroke. They can’t entirely rule out that it’s the cancer pressing on the nerve, but the MRI doesn’t show that happening. Most likely, it’s Bell’s Palsy, which I understand is a catch-all term for partial facial paralysis, usually caused by an infection (which I had recently), but for which doctors really have no clue. Sometimes they give you steroids to fight the swelling and make the symptoms go away, but after checking with my oncologist, I can’t have those because it would delay me taking part in the clinical trial. If it is Bell’s Palsy, symptoms usually start to go away in about 2 weeks. If it’s the cancer, they’ll go away if the treatment works.
Basically, I spent 14-plus hours in an ER with little food or water, and almost no sleep, to leave in the same condition I went in. The husband picked me up around noon on today. Until this goes away, I will be channeling my inner pirate and rocking a lovely eye patch so my left eye stays moist.
Author’s Note: In the past 24 hours, I’ve gotten about 2 hours of interrupted sleep. Blame any typos on that.