Soap Opera Style

Oops - this one never got posted; it's from a couple weeks ago so please read with that in mind!

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I’ve told a few people this story but thought it was amusing (and short!) enough to write down.  While I was in the hospital we figured out that one medication, Lorazepam, that I’d been taking at night to help me sleep also helps a lot with my nausea, so I ended up taking it during the day last time the week after chemo, and will again this week.  However, while I knew that it was useful for anxiety, sleeplessness, and also nausea, I didn’t know that it could also give you mild amnesia. 

So I happily took it, thrilled that the combo of my reduced chemo dose plus the Lorazepam helped me feel better.  I also went to work, and sat through 4 hours of storyboard reviews on Wed and again on Thurs.  It turns out that this was an ineffective combination. 

On Monday I went back to work and started talking to people on my team about the storyboard reviews, but I quickly realized that I remembered the room we were sitting in, and remembered starting a question and having no idea where to go from there, but I couldn’t remember anything else we’d discussed AT ALL. 

My friend Alyssum pointed out that I was now completely ready to join the storyline of a Soap Opera with my handy amnesia – all I need is an evil twin, or a daughter I didn’t know I had, or to marry my husband’s brother by mistake.  I’m looking forward to figuring out what I forget this next week.  Please keep me posted!

Chemo Blues

When I try to describe myself during somewhat annoying personality-quiz like management training classes, “happy” always makes the list.  It might be accompanied by words like witty, snarky, smart, impatient, effervescent, etc., but happy is always there.  Which is a bit of a problem these days because it means that I don’t really have the equipment to deal with depression. 

 

One of the less fun side-effects of chemo, aside from raging mouth sores which are thankfully not making a prominent recurrence at the moment, is what I call the “chemo blues”.  It’s not a deep depression, but it’s just a level of gloom that permeates everything from about the Wed-Sun after each treatment.  Given how things are going in my life, and in all my friends’ lives, there is reason to be bummed out, but this is something that feels unnatural.  Half my brain is busy being very sad at everything, and very emotional, while the other half of my brain is busy being disdainful of the first half, saying things like, “God you are boring as fuck!”. 

 

Then I magically get better, sometime on Sunday afternoon.  And all of a sudden the next chemo dose seems completely manageable and life, while rocky, seems hopeful again.  It’s surreal.  I’m guessing it’s also how many people feel all the time. 

 

Today’s my last dose of AC chemo before I move onto the easier Taxol.  Hopefully this will be my last week of firsthand experience with the Chemo Blues.  But I hope I can remember this the next time I’m talking to someone who’s feeling down, and have more empathy for what they’re going through.  I can’t fix it, but at least I can understand. 

Randomized Ice Cream Trial

My Doctor has placed me on a randomized trial today - will I spend my chemo session sucking on ice cubes, or downing Tillamook chocolate ice cream?  Only time will tell.

Let's back up for a second - last week was great; I felt strong and healthy almost all week, except for the time when I thought it would be a good idea to go for a long walk with Ethan, and then even though I was really tired and wanted to call Jeff to pick us up half-way through, I decided that I could "push through it".  Turns out you can't "push through it" with chemo side effects.  Also the fact that we got lost in the woods near our house on the way home and were trailblazing probably didn't help.  But otherwise, last week was good.  I was able to be at work most of the week and catch up on things, I played with the kids, and I was able to eat acidic foods without wanting to curl into a ball. 

So today I'm at Swedish waiting for my next chemo dose.  We're going to lower my dosage by 15% in the hopes that that prevents some of the side effects while still being effective, but I'd also heard about people sucking on ice chips during chemo to help prevent mucositis (by the way, do not do a Bing search of that because the images that come up in the main search results are really horrifying) which sounded like magic mumbo-jumbo but I thought I might as well talk to my doctor about it. 

(Geeky aside: A friend had mentioned that he'd heard about an application of this to prevent hair loss, where you could basically ice your head to keep from losing your hair.  I was imagining a Jetson-like hair salon with big hoods with pumping cooling fluid.  Turns out that people usually use dry ice, although Dr. Kaplan did a study with a pharmaceutical company that was making special helmets you could pump through but (a) it doesn't really seem to work except possibly in cases where people were getting chemo drugs that only sometimes make you lose your hair (not applicable for me) and (b) Dr. Kaplan is not psyched about it anyway because it prevents chemo from going to the outside of your head, which means that it's not fighting any cancer there.  Note that breast cancer can move to your skin, but doesn't move to your mouth.   Either way, I am kind of a fan of my bad-ass bald look so I would be skipping that regardless.)

It turns out that, if this ice thing works, it works by constricting the blood vessels in your mouth so that you don't end up with as much chemo getting absorbed.  That actually makes sense, but they don't have any hard data on how effective it is; hence the planned randomized ice cream trial, because at least then there would be the positive side effect of ice cream.

....And Home!

Just a quick update that I'm back at home and thrilled to be here.  As much as I am grateful for the care and medicine I received at the hospital (and I am grateful; I clearly really, really needed it) it is much better to be home.  I'm not 100% yet or anything, but Percocet is keeping my mouth pain in check for the most part, and seeing the kids again has been awesome.  Here's hoping we can avoid a repeat!

Today's News

Plans have been slightly revised today - we're going to take another week off from chemo to let my white blood cell count go up, and to let my mouth finish healing. 

I was initially worried about what that meant for my overall chances of fighting cancer, but Dr. Kaplan took the time to explain to me (one of many reasons I love him) that the research shows that the important part is that we do the 12 weekly doses of Taxol.  For the 4 bi-weekly doses of A/C that  I'm doing now, there's only one larger study that shows a very small improvement in doing it bi-weekly vs. every three weeks.  Either way, as he said, if I try to do A/C again on Monday I will just end up back in the hospital.  And much as I'm enjoying my room with a view and the lovely nurses, I'd like to avoid being here another month. 

In other news, I woke up hungry for the first time in a few days today and ate some breakfast without feeling nauseous.  And with the fog outside and my stack of books and cup of tea, it actually feels quite cozy. 

Good News

I'm choosing to look at this as good news - I'm in the hospital now as of Monday night and will probably be here for the rest of the week. 

As you may have noticed in my past couple posts, I was feeling pretty out of control.  The whole "cancer and control freaks don't mix" had never been more apparent.  After my first dose of chemo, it was hard, but by week two I was feeling better and was able to play with the kids, take them to the symphony, and work full time.  I felt normal.  So I expected the same pattern: week1 - suck; week 2- ok. 

Instead, the sores on my mouth were so painful by Monday that I could barely eat.   I was way more tired than I had been during my "off week" before, whether from not sleeping well, or just managing constant pain.  I'd been prescribed 6 different mouthwashes, none of which seemed to do anything, many of which were supposed to help immediately but would work for 10 minutes at best, and others which were supposed to help long term but I didn't think I could make it much longer.  Finally Monday morning I talked to my oncologist and he prescribed YAMW (yet another mouthwash) and told me to take some of my leftover Vicodin from surgery.  I hate taking narcotics, but I was desperate to have anything that could take the edge off the pain.  So I got home and ran around the house frantically but couldn't find it.  Yikes.  My mother in law found me crying but I wouldn't let her interrupt Jeff because he was on an important phone call in his office - luckily he opened the door so she was able to ask him and he found some for me.  Okay.  Except that I took it, and not only did it make just the tiniest dent in the pain, it also started making me sick.  So by Monday night I was throwing up, getting chills, and oh yeah, still in unbearable pain. 

In my head, I felt my choices were 17 more weeks of this OR having my chemo drugs toned down and then ending up getting cancer again because we wouldn't be "curing" me.
And this is when getting admitted to the ER at 2am is a good thing.  We drove to Swedish, it turns out I had a fever (from an unidentified infection; we chemo patients are susceptible to that sort of thing) and a really really low white blood cell count (i.e. no immune system).  But it also turns out that morphine + Tylenol through an IV can work wonders on pain. 

And so two days later, I'm still here and feeling a lot more under control.  My mouth sores aren't gone, but they are under pain control and feel much more manageable.  I'm still not eating much  (although the nutritionist did send up a chocolate high-protein shake which I managed to get down; my nurse Jean was very proud of me).  Best of all, my white blood cell count, which is still way too low, has at least started rising, and my fever seems to be mostly better as of this afternoon. 

Most importantly, Dr. Kaplan told me that I am having a reaction to chemo that's a 12 on a scale of 1-10.  But what that also means is that the cancer is really susceptible to chemo.  So he's confident that he can lower the dosage for the next two rounds without effecting the overall outcome, but while preventing me from losing my marbles again.  I'm going to be sticking around here till at least Friday so I will be healthy enough for my next round of chemo, and hopefully by then:

• my mouth will be mostly healed
• I'll have ways of doing pain management at home too, and
• I can get back to my bad-ass bald look, which works way, way better when I'm not pairing it with a hospital gown

Ugh

One of the doctors I talked to before starting this whole cancer treatment thing told me to avoid cancer blogs, because the people who blog are the ones who are having a hard time.  Well I think it's true, and we're in for a depressing series of posts; sorry folks.  Feel free to skip ahead about 17 weeks if you can.
I just had my first actual throwing up incident since starting chemo - and it was from the Vicodin I'm using to try to mask the intense pain of my mouth sores.  I've never had issues with Vicodin in the past, not that I've taken it all that often, but apparently chemo drugs + side effect drugs + the soup I had for lunch did not make a good combination.  Ugh. 

WTF.  It would all be worth it if the Vicodin actually stopped the pain, but it doesn't even do that.  I think I may lose my mind.  If all future blog posts sound like ramblings of a crazy person, I'm going to blame it on my unbelievably sore tongue. 

Okay, back to trying to distract myself with Orange is the New Black.  I guess I should be grateful I'm not in prison?