Thursday, April 30, 2015

Silver Linings

1. Lots of time at home in my pajamas watching TV.
2. Really good excuse for not having to go to 20th high school reunion.
3. Will not have to shave legs for months.
4. My boss decided to up my vacation to 4 weeks for some reason.
5. Don't have to worry about the annoyance of growing out my bangs.
6. Can eat whatever I want because who cares about being chubby when you have cancer.
7. Don't have to clean cat litter for three months.

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I wrote that list on February 17th, the day before my surgery, when I was having to expend a lot of effort to think positively. It's still pretty accurate!  Although I will say it's far less TV/pajama time than I anticipated - with the exception of Friday night and sometimes Saturday, I am pretty much okay to do whatever I want, and still have a relatively hard time keeping up with my DVR. And I will say, it is more disconcerting than you'd think to go from a lifetime of shaving your legs every single day to just NEVER. It's weirder even than being bald on my head.

To the list, I will add:
8. Lots of people are really, really nice to me.
9. I've quit paying attention to the news for the most part. Hopefully I can keep this up after I'm through treatment because I am not looking forward to 18 months of presidential election nonsense.

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I had treatment 8 of 12 yesterday, so only four more to go. FOUR! I may just be getting used to the cycle or maybe forgetting what it feels like to not be having chemotherapy, but I feel like parts of it are getting easier. At the very least, they are not getting worse. So that's a pretty big silver lining too.



Tuesday, April 21, 2015

Jane Girls 4ever

Thirteen years ago, when I was 25, my boss got fired. As I was his executive assistant, this meant that for months I had no work to do. One day as I was sitting around, mostly doing nothing but trying to figure out how to renew my Jane magazine subscription online, I discovered on the Jane website what I saw at the time could be a fantastic way to pass my bored days: MESSAGE BOARDS. Message boards filled with people arguing over politics and yelling at trolls, talking about what they were reading and watching, asking for advice, listing what they ate that day, sharing pictures of their lives. I signed up immediately. It was an intimidating group; many of them had been posting for years and were already real-life friends, traveling long distances to attend meetups. I knew I wanted in on it.

In the intervening time, it has been the rare day that has passed without me talking with my Jane girls. I have posted from Tunisia, from Scotland, from Spain, from Colorado, Missouri, Montana, Key West. From three different jobs (shh). From three apartments and my current home. I have attended meetups in Ann Arbor, Michigan; in Columbus, Ohio; in Door County, Wisconsin; in rural Tennessee; in New York City. I hosted one at my house. The best friends we made in California were all Jane-based, and we moved to North Carolina in part because I already knew someone here, even though I had never met her until we arrived with our U-Haul. She met us at the hotel the very first night. Some of the best friends I have in Raleigh are a result of a book club started almost ten years ago by three Jane board veterans.

Still, after all of that, you don't really realize what people mean to you until the shit hits the fan. The shit in this case, of course, being cancer. When I was diagnosed I told Ben, and then my mom, and then my girls. And then they kicked into action and there have been zero days since when I haven't felt that a hundred people from all over the world had my back every second of the day. I have received countless cards and packages. Every day, almost, something new. I have been keeping a list in a notebook and it's three pages long. And every bit of it is exactly right - either something I didn't know I needed that has turned out to be crucially useful, or something I wanted for myself but hadn't gotten, or something to brighten up my day in a way I  hadn't even considered. Pizza Rolls delivered to my house the day before surgery, for example. Comedy DVDs to pass those awful weeks between diagnosis and the pathology report. Birkenstocks! Gift cards to all of my favorite and usual places. Handmade hats and candy and silly t-shirts and subscriptions to food delivery services. So many cards, funny and heartfelt and sarcastic and perfect. And today, a dress I mentioned in passing that I liked but wasn't letting myself buy.

We used to talk about whether or not we could get on Oprah, considering how we started so many years ago on a public message board and have formed such lasting bonds despite the fact that many of us have still never met in person. But now Oprah has been off the air for four years, and we're still going. I wish everyone could have internet friends like these - internet friends who are so real I haven't thought of them as internet friends for years. I am so, so lucky. Thank you, crazy fiber optics company CEO, for firing my boss. I would not be the same person today without these people in my life.

And thank you, my lovelies who are reading this. I love you. For real.

Saturday, April 11, 2015

A Chemo Day in the Life

I have a bunch of stuff I take to chemo every time. The nurses make fun of me in a good-natured way but mostly everyone I see who doesn't have someone with them has a similar bag. It's boring, sitting there! I need my stuff! Generally, I take:

  • my big giant LL Bean bag, given to me by dearest internet friends who, collectively, have so far anticipated my every need
  • a big soft blanket, which I received from a friend I've had since the days of Rainbows and Odyssey in St Joe
  • a junky cardigan sweater from Target, which still has bits of sap clinging to it from when my sister made me help her drag their Christmas tree outside first thing on December 26th
  • some soft socks with grippy bottoms, a gift from another internet friend, so I can take my shoes off but still be up and around without sliding all over the place
  • my Kindle Fire, a gift from my sister 2 Christmases ago which I could not possibly have anticipated how much I would come to rely on. Every cancer patient should have a Kindle Fire (or an iPad, I guess). It's my lifeline to Netflix and Amazon Prime and Spotify and the internet and a jillion books
  • a bottle of water
  • a Kind bar
  • a book (never once have I read the book, but what if technology fails?)
I get there at my appointed time and go back to a big room with about 20 comfortable chairs spaced out around the edges. There are huge windows looking out into a garden, which has been nice now that spring has finally arrived. There are usually four nurses working and they let you sit wherever you want as long as you're in your assigned nurse's general area. 

The first thing they do is draw blood to make sure my counts are okay to receive chemo. The weekly Taxol is generally not too hard on white blood cell counts, but everyone is different and some people do have a hard time with it. So far mine has held steady. It takes about 15 minutes to get the CBC results back, so for that period of time I'm just sitting around. 

Once we get the all clear on the bloodwork, they give me Pepcid and dexamethasone by mouth, and Benadryl by IV. These meds are all to counteract the side effects of chemo - the stuff Taxol is suspended in can cause allergic reaction, hence the steroids and Benadryl, and I don't really know why I need a Pepcid, but whatever. The Benadryl is serious business. It's the same amount as you'd take to go to sleep (if you are me and don't mess around and always go for the 50mg) but it hits fast and hard, and for a good hour or so I kind of drift in and out. Usually during this time I try my hardest to pay attention to a TV show (current: Gilmore Girls) and fail and then just sit there and listen to music. 

After they give me the pre-meds, they order the chemo drugs. I understand chemo meds are very very expensive but it is super annoying to me that they can't have these ready when I get there. It takes another good 45 minutes or so to get the meds from the pharmacy. Finally, usually when I am starting to perk back up, it's time for Taxol, which takes an hour, and then Herceptin for 30 minutes. 

Eventually I have to pee, which is a big pain. You're supposed to drink tons of water all the time when you're receiving chemo, and treatment days are no exception. I always have to pee at least three times when I'm there. I hardly ever see anyone else having to pee! I guess I have a small bladder, or maybe everyone else isn't being conscientious about their water intake. Anyway, it is a big pain to unplug the IV and get up and go to the bathroom dragging that thing behind you. It's less of a pain now that I receive chemo through a port rather than IV - at least I have both arms free.

Once the Herceptin is done, that's it! They flush my port and unhook me and I pack up all my stuff and go home. All told I am usually there about 3 hours start to finish. It really goes fast, though, thanks to my various methods of entertainment. Usually I have chemo in the afternoons, so I work from home in the morning and then just check back in for a few minutes afterward when I get home. I never really have any side effects that interfere with my life until a couple of days later, so I try to cook dinner and go for a walk that night and just do things I would normally do. Only seven more times to go!

Thursday, April 9, 2015

41.66666%

Chemo #5 of 12 is done, and there is not really much to report. The weeks are following a pretty clear pattern:

Wednesday: chemo
Thursday: feel fine until evening, when my skin starts to hurt
Friday: skin feels better but usually wake up jittery. Jitters fade as day goes on but I get kind of tired and spacey, like when you have the flu.
Saturday: more or less like Friday, maybe a little better.
Sunday/Monday/Tuesday: more or less normal.

So, all things told, it's really like a day and a half of badness and the rest of the time just waiting around for the next dose. I am lucky in that my side effects are not of the nausea/vomiting/mouth sores/other terrible horribleness that some of the other drugs can cause. I do have some aches and shooting pains on days 3-5 and other minor things that go on throughout the week but, in the interest of not being gross, I'll just not go into that.

The main problem with Taxol is neuropathy (tingling and numbness of the hands and feet), but since I am on a weekly dose the chance of that occurring is supposed to be less than on the older spaced-out higher dosages. I'm taking glutamine and B-6 supplements, which the internet says can also help decrease the likelines and severity, although my doctor doesn't seem to think it makes much difference. I haven't had any of that yet, anyway, and I hope I can stave it off until close to the end. If it gets bad enough, it can be permanent, which I do not want.

I did shave my head last week, which all things considered was not as traumatic as I imagined. People keep telling me I look good bald. Since most of them are my friends, they might be lying, but one of the warehouse guys I have never met before said to me in the parking lot, "that haircut looks sexy. But I ain't tryin' to hit on you or nothin'." I do have a wig and wear it sometimes, but it's suddenly weirdly hot outside and it's a lot more comfortable to go without, especially for a long period of time like an entire workday. It also feels like I'm wearing a costume - I know it looks natural to people looking at me, but it doesn't really feel natural to me to be wearing it. I'm sure I will get used to it as time goes on, though.

So that's it! After next week I will be half done! With this part of it, anyway.