Tamoxi-fun? (also known as Tamoxifen)

I started hormone therapy about the same time I started radiation. Of the two radiation seemed more immediately severe but that isn't to say I wasn't worried about tamoxifen. In fact, I had a full-blown melt down the night I had to start it. You see, I'd had the misfortune of reading the internet.

I need to remind myself that often people that comment and post on the internet are there because they have an axe to grind. They want to complain and they want people to listen. I'm not saying that isn't valid or even that people shouldn't do that, it's just that when you start doing research about the drug you have to take for the next FIVE years and everyone on every message board is talking about how it is ruining their lives, you start to worry. I was imagining the next five years being a slightly better version of the 4 months of (mostly) hell I'd just completed and trying to tell myself that even a shitty five years was better than no years at all. This was of little consolation.  So what did I do? Well, I cried, a lot. I felt sorry for myself. I whined while Paul dutifully listened. And then, I took the pill.

I got some great advice when I first started taking it, which I will pass along. I take the drug just before bed. I heard through the grapevine of cancer connections that doing this seems to make the side effects much less noticeable. I don't know if I'm just lucky or if this bedtime thing really is the key but tamoxifen (for me, at least) is hardly noticeable. The list of potential side effects is long and depressing. I won't get into it here, you can find that list easily in many places across the internet. I'm just here to say that there is one woman out there taking this drug who isn't having any noticeable side effects. I mean, I think I've had some hot flashes/flushes/whatever the hell they are called, but I can't really be sure. For someone who is always really cold, these bursts of heat have actually been kind of a nice change. And I read somewhere that tamoxifen interacts with grapefruit so that is off the table, literally, for the next five years.

All in all, this has been a great relief. I'd like to say in the future I will wait to have freak outs until I actually have something to worry about, but we all know that just isn't going to happen. Case in point - I have my first round of investigative medical testing on the 6th (totally normal and just to check in, by the way) and I'm already worrying. Even though I'm in a pretty good spot, with pretty good odds. I guess some things never change.

Done

I'm extremely glad to say that I am done radiation and no longer in active treatment!!!! I had my last treatment on Tuesday and yesterday the Ambassador and his assistant hosted a party for me to celebrate.

I know it is a weird thing to say, but in addition to being very glad, I also have a bittersweet feeling. It wasn't that I enjoyed radiation but while doing it I felt like I was being active in dealing with cancer. Now, I've moved into the "wait and see" part of the cancer journey. Hopefully this part is a lot of waiting and no seeing, but either way I have to start getting used to this new worldview. I'm on the other side of cancer now. I know what it is like to be told that you have cancer, I know how terrifying it is to sit across from a doctor and hear those words. I know how shitty it is to deal with treatment; the slash, poison, burn approach that is currently the norm. Worst of all, I know what it feels like to really think about your own death - not in the abstract way that I think we all do, but to really contemplate the reality of your own mortality and the fact that the end may come much sooner than you had ever anticipated.

Don't worry, I won't leave you on that note. There is a bright side. For me, this is the bright side: cancer is life changing but for me it did not become a catalyst for wanting to make change in my life. Why is that a good thing, you ask? Because it means I'm actually really happy in my life. There isn't much I would change. I have a husband and family I love and LIKE. I have great friends. I have a comfortable life filled with love. Sure, day to day I'm trying to live more fully (or I will be now that I feel better) but in the big picture sort of way, this wasn't a wake up call except to highlight to me how much I value my life and everyone in it.

Although I don't want to die tomorrow, if I did, I would leave behind very few regrets, save for the regret of the years I would miss with those I love. I can't think of a better way to live my life, or a better regret to have. 

Cancer 411

I was at a party the other night, and cancer came up, as it so often does. In part, I'm sure this is because I still look weird. In a couple months (I hope) I should no longer look like someone who is going through treatment but for now, I do. My way of coping is to talk about it. I don't want people to feel weird about being around me for fear that they can't discuss cancer or my baldness or whatever. Cancer is the elephant in the room and I prefer to just acknowledge the elephant so that other people can too.

I know that people handle cancer in their own ways so I try not to get too worked up if people respond in ways that I think are weird or insensitive. That is just their way of coping. When you get diagnosed, inevitably you run across a website or a blog or just another person warning you that people cope differently; some people are there for you during these times and others aren't. This has been true for me too. I have to say, in general, people have been amazing and supportive and so there for me (even if they are in another country) but some haven't been in touch at all. That is life. Maybe these people don't know what to do, what to say or how to say it. The real truth is, no one does. So I've decided to jot down a few notes for people. I'd like to think I have some insight, but I also know that what is true for me might not be true for every other person with cancer. I'll try to keep my advice general.

1. Don't mention every person you know who has DIED as a result of cancer. THIS IS NOT HELPFUL!!!!!

One person here, in particular, just does not know what to do about me and my cancer. She (I'm giving away secrets here) spent one 15 minute conversation telling me about all the people she knew who had died of cancer. I think it was because she felt like she should talk about the elephant in the room but didn't know what to say. Do you know what isn't at all helpful? Getting the rundown of cancer death tallies from your life! But she isn't the only one. Are people insane!?! I guess it is comparable to those people who like to tell birth horror stories to the pregnant woman in the room. So free advice part 1 is this: if you want to talk about your friends/family with cancer, try to talk about the ones that are doing really well. Please!

2. Don't ask what you can do to help, just do it. 

People asked all the time what they could do. I hate asking people to do things. I hated even thinking of ideas. I felt so rude and demanding, I simply couldn't do it. Were there days I would have liked to have someone drop off food? Yes. Did I ask anyone, ever? No.

In my case, I didn't need a lot of help but I know that isn't the reality for everyone. Free advice part 2: If you know someone with cancer, or any serious illness for that matter, and you want to help, just do whatever it is that you were thinking of doing. Dropping off a meal is probably the easiest thing. If you feel comfortable enough (and you know they won't mind) invade their house and vacuum or dust. Instead of waiting for people to ask, make an appointment to do it, whatever "it" is.

Before this I was totally guilty of saying "if you need anything, let me know," which I completely meant, but rarely did anyone ask for help. In the future I'm going to try and take a page out of my own book and just do.

3. Don't ask "why did you get cancer?" or "what did you do?"


I know this question comes from a place of fear and that people ask it hoping to hear that you did something that somehow explains why you got cancer. Even if I had, which I hadn't, it is still a crappy question to be asked. Free advice part 3: If you really must ask, do it in a round about way and ask if someone has a family history of cancer.

4. Be hopeful, but realistic. 

I've saved the hardest for last. This one is hard to put into words but I'm going to try. One of the things I found most challenging/frustrating was dealing with people who refused to accept the realities of my treatment. For me, this happened primarily about my hair but it could be true for any negative aspect of treatment. Some people insisted that I might not lose my hair. Hair loss, in particular, was a side effect that people wanted to naysay. At the start of treatment my doctors told me I would lose my hair. All of it. My doctor wrote up a list of all my possible chemo side effects and the only one she guaranteed was that one. She wrote out "100%" and then underlined it! However, people actually told me "not to be so negative" and not to make those assumption because, "you never know." If a doctor gives you a 100% certainty (and they almost never talk in certainties) you'd be a dummy to deny it. That approach wasn't helpful. I needed help dealing with losing my hair, not pretending it wasn't going to happen.

Sometime people with cancer have very real fears about death and about treatment that are justified. I have fears about death. However I have about a 10% chance of a reoccurrence; my fear is normal but not rational. In cases like that, having people remind me of those statistics is helpful. It is a bit of a reality check. However, it was justified to be worried about losing my hair because that was going to happen. For other people, it is justified to be worried about death because of the kind of cancer they have or the stage of their cancer. Free advice part 4: Where fear is justified, while it is totally appropriate to encourage people to be hopeful, it is also really important to acknowledge that these fears have foundation and to help people find ways to deal with those fears without denying their validity.

The Boost

I have moved into the final stage of my radiation - a period know in the cancer community as "the boost". Up until yesterday I was zapping my whole breast. Okay, technically, I wasn't doing anything except laying there but you know what I mean. Today I got the first of 5 "boost" zaps. The boost is additional radiation targeted at the site of the original tumor. Although I understand this is pretty standard treatment I've also read that it seems to be extra beneficial for young women. Excellent! Zap away!

How they figure out exactly where to aim is a bit of a mystery, especially considering all the tissue surrounding Ethel moved out when she did. I mean, the scar helps as a guideline, I'm sure, but it all seems rather enigmatic to me.

Either way, I've been moved to a new radiation room and put under a much more intimidating machine. This one had a nozzle built into it and what I think was a lead plate on the end of the nozzle with a hole cut in it. I suppose it is how they target the radiation more effectively. I'll tell you this much; although I know there is a lot of science behind radiation, this contraption looked a bit like something that had been welded together in a backyard.

I guess I also find it crazy that medical science is still using markers on skin as a means to deliver treatment. They drew all over me again yesterday and today. Once again they told me not to shower. I was going to listen to them but then I decided that this was ridiculous and that I was going to be a total bad ass and go against their orders and shower anyway. It is enough that I am now in the process of growing out the worst haircut ever, I don't need to be stinky on top of it.

Finally, I don't know if it is the boost or the flu that has been going around, but the nausea has returned. At this point, I actually hope it is the radiation since I only have 4 treatments left, and this flu seems like a real doozy. I've managed to stay cold and flu free through this process and I'd like to keep it that way. I honestly can't believe the odyssey that started last August is almost done. I still have the 6 month follow ups and the pill a day for the next 5 years but I truly feel the worst is over. Well, almost.

What Does Radiation Look Like?

In early January, when I was done with chemo I started thinking about radiation which meant I started doing some research. All along I have approached this from a "one step at a time" framework. I was not going to worry about radiation until I had finished chemo, so it wasn't on my mind until early this year. When I started my radiation research I couldn't find any pictures of what to expect, other than a few that were HORRIFIC. I'm sure these were "worst case scenarios" but they were scary. Do you know 1 in 9 women will get breast cancer in their lifetime? How can there not be any pictures of this? I'm sure it has to do with the boobs.

People, I've made a decision. I'm going to put my semi-naked self on the internet. OH MY GAWD!!!! What has possessed me! Well, for one thing, I want other people to be able to look at these in the future and know that this is what it might look like and that it doesn't look as terrible as some of the photos I was able to find. Also, some of you have asked to see what it looks like.

Chances are, I'm not the only person you will know who will get this disease. Think of this as an encyclopedia. You can refer people here. Don't worry about the pics being too racy, I'm pretty sure these pictures would still be classified as PG-13. I mean, my parents have already seen them! I've only put in the jump so people have the option to not look at my upper torso if they don't want to.

So, if you want to see the goods, click below. And by below, I mean those two blue words: "Read more"

Frankenboob

I was looking at photos of myself the other day from before the diagnosis. Back when I had a full head of beautiful hair, more than three long eyelashes and full eyebrows. This cancer treatment really does wreak havoc on ones appearance! The sad truth is, while my head doesn't look that great, it looks a heck of a lot better than old righty. Ethel left quite the mark with her departure and radiation is turning my skin a brownish-grey. I've started referring to myself as "Frankenboob". If I was a less modest gal, I'd post pictures. As it stands now, you'll just have to take my word for it.

Thankfully, it looks worse than it feels, though it looks pretty bad. I showed my parents the edge of my radiation burn over skype - it was a totally PG view by the way - and my poor dad did not do such a good job of maintaining a poker face (don't feel bad dad, I thought it was funny!). The poor guy looked horrified! I could tell he was imagining an amount of pain equal to the way the burn looks. That isn't the case at all. Sure, it's uncomfortable but if it felt like it looks, I'd be in a bad way. Besides, I sort of enjoy shocking people with my burn. There are so few bright sides to cancer - let me have my moments! It probably comes from the same place that enjoys showing people really awesome/large bruises. I can't explain it, but if you are a member of the "bruise-bragging crew", I trust you understand what I'm talking about.

At least, as of today, I am more than half way through radiation. While the road ahead might be tougher than the path I left behind, I know that I am closer now to the end than the beginning. When I started radiation on January 4th, the end seemed such a long way off. Now the end is starting to roll onto the horizon. I'm not sure what state my Frankenboob will be in when it gets here, but at least I know the end is closer than it was when I started.

My hair is starting to come back in on my head and my eyelashes and eyebrows are starting to fill in. I don't know how long it will be before I feel comfortable strolling around without a hat or a wig but at least there is some fuzz growing on my head. Maybe one day soon I'll have longer hair than Paul! A girl can dream......

Lunar New Year

I'd write more often if I had more to say but for now I feel like I am mostly biding my time. I'm on a mini radiation vacation, thanks to the Lunar New Year so this is the fourth day in a row I've not had to go to the hospital to get zapped. The timing is good - I'm a little less than half way though and my skin could probably use the break. I'm definitely getting a nice, lop-sided tan. I'm still feeling sick pretty much every day but other than that, radiation is uneventful.

I meet with my radio-oncologist once a week and she checks in on my skin and other side effects. When she asked how I was last Wednesday I ran through my complaints (more on that later) but ended by saying that so far, it was way better than chemo. Her response was "Yah, of course." Although I figured this would be the case, based on internet research, no one has come right out and said radiation will be easier. I guess because guarantees like that are hard to come by in medicine. Either way, her response made me glad. And hopeful that I can ride out the next month with relative ease.

The "more on that later" side effect is the only scary one I've had so far. While riding the bike last week I had very strange vision. It was like it was pulsing and with each pulse I could see all the veins in my eye. Weird, I know. I've had this happen once before, while I was sitting in the hallway waiting to defend my thesis. Since that time I could attribute it to stress I wasn't too worried. This time, I wasn't stressed but I was working out. I was worried that the chemo had done something to my heart. I mentioned it at the hospital and after some consultation my physician decided it probably wasn't anything to be too worried about. I guess at times I forget how much my body has gone through in the past six months. It's very unlikely heart damage and more likely just a combination of fatigue and stress and everything else.

So there you have it - all of the updates from the past week or so. As you can see, there is not too much happening in my neck of the woods and hopefully that is the way that it stays.