It's always springtime at the tattoo parlor

Today I got involuntarily tattooed.  

I went in today to get measured for my radiation that'll start on Monday. First of all, let me admit that my basic math skills need to be sharpened, because I got all excited that if I started Monday I'd be done on my birthday, but it turns out that starting Monday means I'm done a week before my birthday. Whatever, I'll take it.  

Anyway, getting measured involves getting a CT scan so they can figure out where inconvenient things like your lungs and throat are and how they can radiate you completely without hitting those. There were some surprising things about the whole CT experience that were different from the PET-CT scan I had about six months ago. First of all, the ceiling of the CT in the radiation oncology suite is covered in pictures of cherry blossoms. I thought perhaps they changed it according to the season, but apparently it's always springtime there. It was also strange that I was told to keep my shoes on but then they rubber-banded my feet together to keep me from moving around. Wearing boots with your feet held tight by rubber bands is not my idea of comfort.  There was also a strange doughnut-shaped pillow that I had to rest my head on.  

Before starting, they stuck some wire-like stuff on me to use as places to measure from and then I got to slide through the machine. The images they ended up with (I made them show me!) were pretty cool. There was a specific area that they are going to hit with deeply penetrating radiation, with extra across my scars because apparently that's where cancer is most likely to re-occur (perhaps because scar tissue is fast-growing?  I'm not sure), and then an area where they'll use some kind of shallow radiation so it won't hit my lungs. They'll get my lymph nodes and breast but not my neck.  

Once they figured this out, they came out and drew all over me with marker and then the nurse casually said, "I'm going to tattoo you now." This is something you'd think they'd have mentioned the last three times I'd come in, right? I was totally not prepared - I asked if the tattoos came off and the nurse looked at me like I was crazy and said, "They're tattoos. No they don't come off." Perhaps for some people this is no big deal but for me it seemed somehow barbaric. But at this point, I didn't really have a choice. The only positive thing was that much of my chest is numb, so it didn't hurt.  

So I'm now officially a tattooed woman - four little dots across my chest. And I go in Friday for a dry run to make sure all the machines are up and running. Just a few days later radiation starts for real, and assuming all goes well I'll be done April 18th.  After that I might have to look into getting a real tattoo - after all, now I'm in the club.  Suggestions?

Everyone Must Be Drinking to Stay Inside GasPanic!

A long time ago, in what feels like a different life, I used to travel to Japan for work a lot.  The trips were always a blast, with lots of important partner meetings book-ended by lots of excellent food, fantastic people-watching, and mildly excessive drinking.  There was a bar that we particularly liked in the Roppongi district called GasPanic, supposedly named for the Sarin gas attacks in the Tokyo subway system several years earlier (why someone would think this was a good idea, I have no clue).  From their website, a classically Japanese point of view:

[GASPANIC] offers a special atmosphere that helps its customers to forget about their daily, hectic lifestyles. Any bars can serve alcoholic beverages, but GASPANIC likes to offer an energetic atmosphere to make its customers smile and give everyone a great time. 

And in the bar was a sign to ensure that you weren't just hanging out taking up space - "Everyone Must Be Drinking to Stay Inside GASPANIC!" 

Anyway, I've been thinking about that the last week or so as I've been dealing with yet another crazy chemo side-effect - this time strange pressure in my chest that makes me feel like I'm having a panic attack - except I'm totally fine, breathing normally, and it only happens when I'm relaxing.  My doctor thinks it's just reflux caused by the chemo presenting itself strangely, and every test they've done shows that I'm just fine, but just like I've read that smiling can make people happy, feeling like I'm having a panic attack has been making me...well...let's just say stressed out.  

Part of me is just astounded at how strange the human body is, and part of me is just so completely ready to be feeling all better that I can't stand it. Calming thoughts sent my way would be very welcome right about now.

Out with a Bang, also known as #ChemOver

It’s Saturday night, and Monday is my last dose of chemo. 

On balance, I’ve been super lucky through the second chemo drug I’ve been on for the last 11 weeks.  I’ve had relatively mild side effects, specifically managing to avoid the neuropathy that’s a common side effect.  My “Chemo Salons” (where all sorts of interesting friends have come to keep me company while I’m at the hospital) have been amazing – a wonderful way to reconnect with friends I haven’t seen in a while, and an almost guilt-inducing chance to have kid-free conversations with some of my favorite parent friends.  And my wonderful family and friend support system have continued to pitch in to help keep the rest of my life running relatively smoothly. 

However, this last week has been kind of a pain in the ass.  I’ve been unnaturally grumpy in a way that I can tell is somewhat medication related (because usually I’m just a peach!) and my mouth and tongue sores have come back, probably because I stopped being as hard core about chewing ice during my treatments.  Work has been full of fire drills and re-orgs, nothing serious, but a lot of running in circles.  I’m nervous about what radiation will be like and sad that my in-laws are going home on Tuesday.  I think most of all though, I’m just ready to be done. 

The good news is I’m almost there.  I have an awesome lineup of friends planning to come to my last chemo day (if you’re reading this I’d love to have you stop by too!) and I’m ready to call #ChemOver and move onto the next phase.  Wish me luck!

New Year

The last few weeks of 2013, tied for worst year of my life, went by in a blaze of suckiness.  Chemo was still a pain in the ass (although certainly better than A/C), Jeff got pneumonia and my mother-in-law had the stomach flu so I was on primary caretaker duty, the kids were going bananas with all the Christmas craziness, and I was generally really glad to see the end of it.  

The beginning of 2014 has been a little better and I've been trying to focus on the funny surprising stuff.  Like the fact that since I've lost all my nose hair, my nose doesn't work right and when I have a cold (i.e. all winter) I get unexpected dripping at odd moments - like mid-sentence in a conversation.  Or like the strangeness of getting a pre-nostalgic about the coming end of my chemo parties in six weeks - my weekly chance to catch up with friends uninterrupted by kids or activities.  Who would have thought I'd miss it? 

I feel a bit like a blind person reaching out, starting to feel the edges of normal life approaching – they’re still a bit undefined; after all I have a whole heap of radiation to do, and another 11 months of Herceptin, and 5-10 years of Tamoxifen, not to mention reconstruction – but they’re there below my fingertips.  My wonderful in-laws are planning to leave in a couple weeks now that they’ve been here 5 months, and we’ll have to figure out what life with just our family looks like on the other side.  It’s scary and exciting and exhausting all at once.  Here’s to a 2014 that brings joy and health and satisfaction for all. 

Cancer Perks

• When people post a photo of you with no hair (or a cute hat) on Facebook, you get a crazy number of "likes" 
• Sometimes people notice you're feeling unwell while waiting in line and insist on paying for your shopping (seriously, just happened to me today, a very sweet retired nurse whose husband is going through chemo too)
• You get to go to "cancer makeup class", get a bunch of fancy makeup you'd never buy yourself, and meet some other awesome women
• People give you special brownies, and show up at your door with scarves, chocolate, and wonder-woman underwear
• You get to spend lots of quality time catching up with your friends during chemo sessions; way easier than scheduling coffee dates with everyone
• A sore tongue (yes unfortunately it's back, although not as bad as before) gives you a guilt-free excuse to eat ice cream

No news is good news!

Nothing very exciting to report from this week's chemo appointment - no allergies (yay!), lovely company, really nice nurses as always.  The only annoyance was another loooooong appointment.  However, given that we got several dirty looks from people in various waiting rooms who seemed to be grumpy that we were having a fun time, and got to overhear multiple people complaining about how long they were waiting, and that the snow didn't start so our commute home was pretty brief, I can't complain.  

My friend Laura was with me and got to meet Dr. Kaplan, so she's now convinced that between my crush on him and Chris Hadfield, I have a thing for eloquent nerds.  She's probably right.  

Hoping for a better week with fewer cold symptoms and hopefully few chemo side-effects.  Wish me luck!

For Those Who Were Curious...

No allergic reaction to the Taxol thus far, but I've had a brutal cold all week that's been keeping me in bed watching Gilmore Girls reruns.  The kind of cold that, a few months ago, I would have completely ignored and now is kicking my ass.  Have I mentioned that I am pretty much all done with this chemo thing yet?  11 weeks and counting...

Short Interlude

This chemo thing is so weird.  

I keep thinking I’ll get more data as I go further through this, and then I’ll be more prepared and know what to expect, except every time is so different.  

This past session of AC I was just wrecked.  As in, it felt like a semi-truck rolled into me and kept right on going.  It’s not like it should be that surprising; but for someone who’s used to arranging multiple activities per day on the weekend because the kids and I really like to be out and about, it’s disconcerting to be able to manage about 30 minutes of playtime before needing want to go back to bed.  

However, I'm now officially DONE with AC!  And today (right now as I write this) I'm starting my new round of chemo, a drug called Taxol.  I'm here for a long time today because they're pumping me full of steroids and benadryl in case I get an allergic reaction and I get my first dose of herceptin too (also known as Trastuzumab, which sounds like a Romanian Vampire name to me, I love it).  I'm hoping that after the first couple treatments (12 in all, once per week) I'll have a better guess as to how I'll feel throughout, although of course given my AC experience you never know.

In the meantime, I brought my copy of Girls of Atomic City, which I'm reading for bookclub, along with me today, and had a long conversation with Dr. Kaplan about WWII.  I also learned that he served during the Vietnam War by working with a bunch of crazy smart cancer researchers here in the US.  They were told to go buy some uniforms at the store and when they found out they cost $300 they came back told their commander that he could buy them for them himself!  He said he didn't care so they spent the entire war doing research in their jeans.  And he says he's the only one who went on to actually practice medicine; everyone else he served with is running impressive medical research clinics all around the country.  I can say I'm officially glad he's decided to practice; this whole thing is much more feasible with good friends and good doctors to help me through.

That's it for today; hopefully I'll try to post this week and let folks know how Taxol is going.  Hope you all enjoyed your Thanksgiving and Channukah celebrations!

Soap Opera Style

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

___________________

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?

Least Favorite Side Effect

I have a beautifully shaped head, thank goodness.  I found this out today when I went to get all my hair shaved off of course; it was starting to fall out and stressing me out to wonder when it would go in clumps, so I bit the bullet and got rid of it.  Turns out that while it's not awesome, it's okay. 

Less awesome is the fact that my tongue feels like it's been burned and bitten to within an inch of its life; one of the delightful side-effects of chemo for some lucky people.  I will (for now) name this my least favorite thing.  There's some kind of special mouthwash my doctor prescribed me last week, but it turns out it contains an ingredient I'm allergic to (good thing the pharmacist figured that out before giving it to me, I guess).  Instead I've been stuck with salt-water rinses which aren't doing much.  Consider me annoyed. 

It's a "fuck cancer" kinda day. 

Hopefully I'll figure something out or this is going to be a really, really long 17 more weeks of chemo.

A Question of Etiquette

My dilemma last weekend: what do you bring the guy who's volunteered to make you special brownies to help with your nausea and won't accept payment? 

So I was pretty nauseous last AC chemo round, and I know I can get a medical marijuana license but instead I wanted to see if it would actually make an impact first, so a friend of a friend hooked me up.  He was super sweet, told me he had tongue cancer when he was in his 20's, looked up info on dosages for me, and baked really delicious brownies.  But he said it wasn't his style to let me pay for something like that so aside from promising to "pay it forward" which I will do, I wanted to get him something.  Some suggestions from friends included:

• Munchies
• Fancy Brownie Mix
• Mellow music
• Something football related (he's a boy so I guess this is the default answer)

I went with a bottle of wine.  Turns out he doesn't drink...sigh...but his fiancée does so at least it was a gesture.  I really think Miss Manners should cover this in an upcoming letter!

Morning Regimen

It's still a little disconcerting that I have to fill my body with chemicals, and then spend the next two weeks filling myself with other chemicals to counteract the side-effects of all the crap I just ingested.  For example, here is a partial set of all the stuff I had to take this morning.

Hopefully that makes the whole chemo brain moment (per earlier blog post) make more sense! 

   

My First Chemo Brain Moment, Or, The Time I Found Out I Would Make an Awful Bulimic

One of the side-effects of chemotherapy can be what's called "chemo brain" - from what I gather, it's a loss of short-term memory and inability to think quickly on your feet.  It can be a major issue or minor one, and can last just while you're having chemo, or months, years, or forever afterwards.

For the most part, I've been okay thankfully.  I'm definitely tired and a little distracted, but nothing major.  Then the other day I had my first total chemo brain moment.  It was last Tuesday, and I was feeling okay enough to plan to go into work that day at least for a while. 

In the morning, I take a bunch of pills, but the regimen changes over the course of the treatment (so it's different on day 1, 2, 10, etc.)  I'd gotten up, and Ethan was hanging out in bed with me, and I reached over to grab my ibuprofen, which is in a prescription bottle because after my surgery was over I'd refilled the prescription-grade ibuprofen with the regular over the counter stuff.  I took three pills, swallowed them, said something to Ethan, then looked back at my nightstand, and somehow became convinced that I'd taken the wrong medicine. 

At first I was sure I'd taken some anti-nausea medicine, of which I'm supposed to take 3 pills over the course of 24 hours, so I freaked out.  Now I should point out that the ibuprofen is in a bottle that is tall, skinny, orange, and has a white lid.  The anti-nausea medicine, on the other hand, is in a bottle that is squat and white with a blue lid.  There's no way I confused them.  But that didn't stop me from running downstairs to find Jeff and scream that I needed to make myself throw up but didn't know how.  So he told me, and I proceeded to try to throw up for maybe 5 minutes.  I failed miserably. 

Then I went back upstairs to try to see if maybe this had been a horrible mistake, and instead concluded that rather than take 3 anti-nausea pills, I had taken 3 sleeping pills instead (these at least were in a similar container, but they are tiny compared to the ibuprofen so it's pretty impossible that I had mistaken one for the other).  At which point I started screaming, "I have to give an fucking exec presentation in an hour and a half and I just fucking took 3 sleeping pills!", ran downstairs, and tried to throw up again.  And failed.

Why all the running up and down?  Why all the swearing?  I promise I am normally quite calm in a crisis.  But I blame I Chemo Brain (tm).

Anyway, the story ends just fine - I went back upstairs, and conveniently the lid to the ibuprofen has a timer on it that tells you how long its been since the bottle was opened.  I looked more carefully since I'd concluded I was just going to have to spend the next 24 hours in bed and noticed that the timer said 7 minutes.  So it turned out I'd taken the ibuprofen after all. 

And the presentation went just fine.  The End.

Looking forward to another installment of Chemo Brain?  Don't worry, I'm sure I'll have more to share.

In Which I Look Like Sandra Bullock, Supposedly

I'd been stressing about my hair for a while - it's supposed to fall out this week and I couldn't handle the drama, so I figured I'd whack most of it off and take advantage of the fact that I can try a haircut out, risk free, for a couple weeks.  Turns out I kind of like it! 

 

However, the comment I get most frequently is that I look like Sandra Bullock in Gravity.  Unfortunately I haven't seen the movie, but from what I can tell she spends the whole thing wearing a ginormous astronaut helmet, so I'm a little confused.  Thoughts?