Author Archives: Betty's Nemesis

A Long Day For A Short Visit

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…

The Situation, 7/26/15

The Summary.
Glasses are in. Betty’s being a pain. Maybe.

The Details.
Sorry it’s been a while since my last post. There’s been nothing much to write about. Last Tuesday I got my third dose of the Kill Betty Juice, so there’s only one more to go! (For Phase 1 of the study, that is. Whether I move to Phase 2 depends on how well Phase 1 works.)

Is it working? I really don’t know. Signs had been pointing to yes, but some pain has started returning this last week–around the ear, in the ear, up my skull, and down into my jaw. Those nerves are all connected, which makes pinpointing the source difficult. It’s hard to say whether it’s Betty’s signature pain, as well, because I think some of the pain that I had once assumed was Betty pain, was actually being caused by something else (that lump below my ear, which was probably either a cyst or an infection). My current pain is similar to that pain and to some Betty-style pain, mostly at the spot where my glasses rest on my ear. It’s very mild, for the moment at least.

My eyes are still wonky too. I can’t focus my left eye while wearing contacts anymore, and wearing contacts also exacerbates the redness. So for now, it’s glasses everyday for me. Neither the ophthalmologists I saw, nor my cancer doc, are too concerned as everything else about my eyes appears fine.

The holding pattern continues. Any other side effects have been mild. I’m going to mention the pain to my local doc this week, but I’m guessing nothing is going to come of it until I get new scans at the end of August.

Betty Must Die, The T-Shirt

A present from my wonderful sister-in-law! This must be worn while receiving my next round of Kill Betty Juice. May Betty tremble in fear. My army now has a uniform.

Now to continue the trend, I think we need a Betty Must Die the lunchbox, the breakfast cereal, and the flamethrower. (Bonus points if you get the reference.)

The Situation, 7/1/15

The Summary.
The eyes have it. Another reason to be hopeful. And it was another looooong day in Boston.

The Details.
I got my second dose of the Kill Betty Juice yesterday in another epically long trip to Boston. We left the house at 7:30 a.m., got home around 10:30 p.m. I’m a little tired.

Marvelous Ginormous Hospital that shall not be named has a terrible pharmacy system that can’t seem to handle requests in a timely fashion. I arrived for my infusion at 1. I didn’t get my drugs until 3:30, and that was after the nurse was on the phone with the pharmacy demanding to know where the drugs were. If you’ll recall, the drugs take 3 hours to administer, plus time to flush the line when the last one finishes. So I was stuck there for almost 6 hours.

On the plus side, I had time to read an entire novel. On the downside, I was stuck in a windowless infusion room so long I had time to read an entire novel.

Prior to the infusion, I also had several appointments.

Oncologist’s office wants me to see an ophthalmologist (a word I could not spell to save my life, thank you spellcheck) about my permanently bloodshot eyes.

I also got some hopeful news from the surgeon who was checking up on my leaking issue (which, if you recall, went away on its own). He said the lump above my ear is completely gone. He believed this lump was tumor based on feel and my latest CT scans, so if he’s right, that’s a good sign that the drugs are working. Add it to my face returning to normal and my pain disappearing, and… fingers crossed.

Just not too tightly because that’s asking for trouble.

Sides: A Tale of Faces and Effects

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.

Six Reasons To Celebrate Having Half A Working Face

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.

I Continue To Be Abnormal

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.

The Situation, 6/10/15

The Summary.
The first batch of Kill Betty Juice has been administered. My ear is leaking. Again.

The Details.
We were GO for the study yesterday, and I received my first set of infusions. It took… long. Nivo takes 1 hour, then there’s a half hour saline flush, then Ippi takes 1.5 hours. We arrived at the infusion center at 2:30, it took until 3:30 for the drugs to arrive, and I didn’t get removed from the IV until a little after 7 p.m. So much our worrying about hitting rush hour traffic on the way home.

No side effects yet, which is normal. But my ear is acting up.

On the way home (about two hours after the infusions ended because we had dinner before heading out), I started experiencing horrible nerve pain in my ear. When I woke up this morning, my ear was clogged and more fluid was leaking out (and still is). I’m sure it’s just a coincidence, but I’m waiting to hear back from the surgeon who treated the infection in April and the research nurse just in case. At least the pain is gone again for now.

Scream with: Gah!

Hot Date Update

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.

A Friday Night Hot Date… With The ER

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.