Category Archives: Health Updates

Hey there, update

Sorry it took me a while to post this. Life, ya know?

Some news since my last post. The pain has totally subsided, as has the twitching and tingles. My ear, inside, still feels odd, but it’s either getting better or I’m getting used to it because I don’t notice as much anymore.

Anyway, I met with my surgeon to discuss the weirdness, and he agreed with my oncologist that all seems normal. He’s not concerned yet, although he agrees we should keep an eye on things. He thinks it was actually strange (“rare”) that my face/head went back to normal in the first place, so on one hand, we shouldn’t be surprised that I’m experiencing these symptoms. The other, of course, is that it’s weird that the symptoms are only showing up now.

Basically, I’m doing these oddly as usual. So that’s all for the time being, hopefully.

Oh, hey there

Yeah, it’s been a while. But you know what they say: with cancer, no news is good news. Okay, maybe they don’t say that, but they should.

Things have been uneventful here. I was scanned again last week, and the good news is my scans were all clear! That’s two years worth of clear scans since my last treatment.

So why am I posting? Because I’m no longer convinced the scans are the whole picture. Um, pun not intended. I feel like I have an earache in my left ear, and while sometimes an earache is just an earache is just an infection, my overall pain levels (head, not ear) have been on the rise. And nerves in my face are twitching. The last time they did was before the oh-so-fun paralysis kicked in.

My oncologist knows. He’s examined my scans multiple times, felt up my face and lymph nodes, and poked around inside my ear and pronounced the skin normal looking. He’s not overly concerned yet. Although Betty was the master at hiding from my scans before, the docs have a pretty good base of scans since my last surgery to draw on for comparisons. So I’m supposed to be giving things another week and seeing if the pain goes away on its own. (I’ve had pain on and off for the last couple years; that’s nothing new. It’s just that this pain is different, and has twitching with it.) It’ll be a week on Monday, so I guess I’ll see what the weekend brings.

Preferably nothing cancerous.

Not Dead Yet!

In case you’ve been wondering where I’ve been. Not much has been going on, and I almost forgot how to log into this blog.

Anyway… I had my most recent scans before Christmas, and I got the news yesterday that they came back clear. So yay! It’s been over one year now. Oncologist wished me a boring new year. I think I deserve one. Meantime, I celebrate with my third annual Fuck Betty tattoo next week.

May we ALL have a boring new year (health-wise). And happy 2017!

I’m So Inflammatory I Could Be A Republican Presidential Nominee

No wait, sorry. I guess I’m just inflamed? Whatever.

I’ve been remiss with my latest update. On July 18th I saw a rheumatologist (actually several at once) at Marvelous Ginormous Hospital. They poked me, prodded me, and asked a lot of questions. Then they sent me to have blood drawn.

They agree with my oncologist that my issues (random swellings, including congestion, and hair loss) are probably autoimmune and caused by my treatment. But they don’t follow a normal pattern and don’t appear to be classified as any kind of known disorder. No known disorder means no treatment plan – none other than high doses of ibuprofen until my foot swelling goes down anyway.*

*Spoiler: it’s been a week and half, and the swelling hasn’t gone down.

So while I wait and grow steadily balder, the rheumatologist is going to confer with an ENT who specializes in autoimmune-caused sinus issues. And that’s where I’m at. Swollen and shedding, but breathing. (Until insurance cuts off my sinus meds which yes, they did, but my original ENT found a way around that. Because she’s clever and they’re assholes.)

You Won’t Like My Immune System When It’s Angry

Colitis treated. Two sets of good looking post-treatment scans. Obviously, it was getting too calm around here.

We can’t have that. It makes for a boring blog. So let’s backtrack to April…

Right around when I came off the prednisone, I started getting congested. At first, it seemed like the immune therapy might have caused me to have some nasty seasonal allergies. It happens. But the OTC allergy meds didn’t help. Nasal steroids didn’t help. My sinuses were so congested that even when I couldn’t breathe through my nose at all, I could feel them swelling more. My nose would literally throb as things smushed even more forcefully together. Also, I lost my sense of smell. My allergen tests came back negative, but things didn’t get under control until June when my surgeon put me on a prescription nasal antihistamine combined with a nasal steroid. I could breathe again (and eventually smell again), but if I stop taking them, I immediately re-congest.

May now. I wake up one morning and it looks like someone’s punched me in the left eye. The bruising goes away, but my eye remains swollen.

June. One day my left knee starts swelling. Over the course of a week, it becomes so swollen I can’t bend my leg. X-rays show nothing wrong, and my pain (and lack of it) confuses my orthopedist. She guesses it’s a strange meniscus tear, drains my knee, gives me a cortisone shot, and sends me to physical therapy. All seems well.

About two weeks ago, my hair starts falling out in large clumps again. I have no clue why.

Then July, last week. My right foot starts swelling and hurting. Wondering what the hell I did this time, I go to the walk-in clinic on Saturday because the pain is horrific. Again, X-rays show no damage. The nurse practitioner talks to me, and when I bring up my knee, she has an epiphany. This could all be autoimmune related. She orders three blood tests, and the one for a general inflammation response comes back positive. Yay? Answer?

Maybe. I saw my oncologist this morning, and in his words, he “takes responsibility” – it’s probably all treatment related. My immune system is “still really angry.” This is good for all things cancer, but obviously not so great for other things. Unfortunately, when people have these autoimmune responses to treatment, usually they follow a known diagnosable pattern. Mine appear to be random. (Doc told me again how I make his life difficult.)

So, now I wait and hope the orthopedist can drain my foot next week, but that doesn’t seem likely. Doc said the fluid is spread out; there’s no pocket to drain. I will cross my fingers anyway because my foot is huge, I limp, it hurts if I stand or walk too long, and I only have one pair of shoes (my Chucks) that fit. I am not happy. If I get too fed up, I might repeatedly stab my own foot at this point in the hopes that shit will leak out.

Meanwhile, doc and surgeon are going to discuss me and figure out where to send me next. I still can’t have a summer off. Last one was 2013. On the other hand, it’s not cancer.

*stab stab stab*

Scan Update

Yeah, it’s been a while. I know. But in the world of cancer, no news is good news. I mean, if I’d ended up in the hospital again, I’d have been posting like crazy to pass the time.

So, good news! Scans are unchanged since March. Betty is either dead or still being held at bay by my bad-ass immune system. Given the elapsed time, doc is “very confident” that this bodes well for the future. Unless things start changing for the worse, I’ll continue to get scanned every three months for the next couple years.

I might still be dealing with the aftereffects of the immunetherapy in the form of inflamed sinuses, but there’s a little debate as to whether the treatment can fairly be blamed. My ear surgeon (yes, my ear surgeon has been treating my inflamed nose, I just go with it) is going to consult the nose docs to see what they have to say now. Things had gotten better and are now on the downturn again. It could be as simple as I’ve been on nasal steroids for too long.

Anyway, it’s annoying, but it’s not cancer. And that’s really what life comes down to: cancer or not cancer. Anything that’s not cancer is tolerable (or is with a little a lorazepam).

In related news, happy birthday, Mom!

The Situation, 3/30/16

The Summary.
Bills can cause heart attacks. Not done with the colitis crap yet. Still all clear.

The Details.
There’s a lot to cover, so I’m handling this in chronological order. First, guess who got a bill in the mail on Saturday for $10,000? According to my insurance statement, Marvelous whatever hospital treated my second stay as out-of-network, which meant my insurance a) didn’t pay as much, and b) paid even less than they might have because out-of-network stuff requires pre-authorization, which of course I didn’t have because the hospital is supposed to be IN network. After much freaking out, my insurance company assured me someone somewhere made a mistake, and this bill should go away. But will the charges be reprocessed before the bill is due? I don’t know. I was told this could take weeks, and the bill is due sooner than that. I expect lots of phone calls to lots of people in my future. Just what every patient needs – more stress!

Moving on, I had my (hopefully) last colitis treatment on Monday, and I am (slowly) allowed to eat normal foods again. Just to be safe, the GI wants me to have another upper endoscopy to make sure everything is totally back to normal. At least that’s better than another colonoscopy. Endoscopy prep just requires that you don’t eat, which is a hell of a lot less unpleasant than requiring anal purging. (Yes, I wanted to type anal purging just for fun.) Anyway, it’s something to look forward to in May.

And finally, I had my brain MRI last week and yesterday my oncologist declared it to show nothing. (Insert your own joke here.) The good is that there is no obvious sigs of cancer in my head. The bad is that means I still have no clue what’s causing my headaches or the occasional ear pain.

What does all this mean? It means I don’t have to go back to Boston or see a cancer (or cancer-related) doctor for 7 whole weeks! I haven’t gone more than two weeks without being poked, probed, stabbed, jabbed, medicated, felt up, or cut open since May 2014. Almost two years. *boggles*

At that 7 week mark I will get the endoscopy done and see the oncologist for a check-up. Assuming that goes well, I get to go another few weeks before being scanned again. And this is how the routine will go for a while unless something changes for the worse. Let’s hope not. It would be lovely to have a summer unmarred by ER visits, paralysis, colitis, or zombie-like fatigue.

The Situation, 3/16/16

The Summary.
Still fighting and kicking butt. More scans to come. Stuck in a holding pattern.

The Details.
To quote my oncologist, my “scans show no signs of anything that looks like melanoma.” Break out the party hats!

No wait, don’t. Not only is that begging for trouble, it might be premature. While that is the strongest positive language my doc has used to describe the results yet (if you’ll recall, previously he’s always talked about remaining specks), I’m still dealing with ear and head pain. So, next week, I’m scheduled to get a brain MRI, assuming insurance approves it that quickly. If not, we’ll push it back.

Doc doesn’t think it’s likely something will show up on the MRI that the CT failed to uncover, but as usual, we want to be cautious. Just as my surgeon has theories about what non-cancerous issues could be causing the pain, so does he. In this case, he thinks it could be possibly be the nivo making my skin sensitive/allergic to my glasses. Strange new allergies are not an uncommon reaction to these immunotherapy drugs.

Assuming the MRI doesn’t show anything concerning or surprising, I’m moving into a holding pattern. Since I’m off the treatment, all they’re going to do is monitor me. Doc reiterates that the people who have the worst side effects and fastest responses, like I did, tend to show the best long term results. But ultimately, they can’t say for sure which drug it is (or whether it was the combo) that seems to be working. And if it’s the nivo especially, they can’t say how long the effects will last because the drug is too new.

In sum, let’s hope this blog becomes a lot more boring in the future.

Off the Sauce and Other News

Betty (and her related side effects) have been keeping me busy this week. Monday required a trip to the GI to get checked out and another dose of Remicade for the colitis. Then Tuesday it was back to Boston to see the oncologist and get checked out by my surgeon. So, in chronological order…

I’m scheduled for one more dose of Remicade, which I’ll get in another month. In the meantime, I’m stuck on this low fiber diet, although I’m allowed to slowly add some foods back in. Still no raw vegetables allowed, but small amounts of cooked ones are okay, as are small amounts of whole grains. I just have to be careful not to eat a lot of either at once. *sigh* I’ve been feeling fine for the past week (aside from bloating, which I blame on the damn diet, and being stuck in a prednisone fog). No nausea.

I am officially done with the nivolumab and possibly any further immunotherapy. No surprise there. So now we just have to hope that the doses I got were enough to keep Betty in check or kill her altogether. I get scanned again next week, which is good because…

Since I’ve been out of the hospital, I’ve been experiencing ear pain again. Now, I had pain around my ear for most of last year, but for the past couple months it had gone away. I’d hoped it had gone away for good. I mean, is it normal to still be experiencing pain almost a year post-surgery? I don’t know. No one does. But it’s back, both sharp pain inside my ear as well as dull soreness where my glasses sit on the cartilage.

Neither oncologist nor surgeon detected any lumps in the area, and surgeon said everything looked healthy when he searched inside my ear. But then, that’s how Betty rolls. She’s a master of disguise. Surgeon thinks, however, the pain is most likely either being caused by dryness tightening the skin or by the nivo jacking up my immune system and causing it to go crazy around the area, irritating the nerves. Since I remember the pain increasing last summer after my second nivo/ippi dose, this does seem possible (and consistent). I hope that’s all it is anyway.

I’d say I’ll know more after the scans, but as I already stated, Betty is a master of disguise. Luckily, she doesn’t seem to be able to hide in my lungs, so that will be a good indication of whether she’s making a return elsewhere. And so it goes. Please let March be a kinder month than February!


Home at last, and I lasted the night. One step at a time. Some fun observations…

1. I’m on the prednisone mellow. Everything’s just fine. Which is good because it means I don’t mind quite as much that…

2. I just lost as much hair in the shower as my husband has on his entire head. And more keeps coming out. Prednisone was doing that to me a little before this episode, but I’m guessing the IV steroids are primarily responsible for the clumps. Yay for hats and scarves.

3. My stomach is so bloated I look pregnant, but I lost about ten pounds. I’m sporting quite the cheekbones. Alas, I bet a lot of that weight is muscle because…

4. I have zero leg strength. I wobble as I walk and stairs are a challenge. I knew it wasn’t good when I walked the hospital ward, but I thought it was partially lack of food. I now suspect this will take more time to overcome.

But hey, I’m home! And in time to celebrate Mr. Nemesis’s birthday this weekend. Bring on the cake and pizza. I’m medically required to eat bad foods for the time being, so I’ll enjoy it until I start craving broccoli (which will probably be sooner than I can eat it).