Frequently asked questions: The next chapter

I think it’s time for another round of FAQ’s, don’t you? Here we go!

Your hair looks so good! Are you going to keep it short?

If I had a dollar for every person who has told me I should keep my hair this short… well, I wouldn’t be rich, but I could at least buy a nice sweater or something. I appreciate the compliments and everyone’s fascination with my hair growth process. However, I have no intention of keeping my current boy-cut. Having your hair fall out is totally traumatic. Having your hair grow back is totally awesome. I want it to keep growing. I have frequent dreams where my hair is suddenly long again. I look at old photos constantly and lament the loss of my long hair. So although this short “style” (if you can call it a style) is extremely low-maintenance, and perhaps one day I’ll go back to it… it’s still not me. It’s not my choice. And it still reminds me of cancer.

So everything’s good now, right? You feel good?

I never know how to answer this one. Yes, I feel pretty good, in comparison to how I felt when I couldn’t walk up a flight of stairs or raise my arms or sit up without assistance. It’s hard to complain about anything when I know what it really is to not feel well. But if you want to know the truth, I’m not just “fine” and “all better.” I still suffer from fatigue all the time. I often hit a wall in the late afternoon where I feel like I need to lie down and nap. I try not to plan more than one “exhausting activity” (such as grocery shopping) per day, because sometimes I can’t keep up. I have side effects from my drugs. Sporadic bone or joint pain. Headaches. Pelvic pain. Hot flashes. The constant drip of my nose. Tightness around my implant where I received radiation. Lots of little reminders, scattered here and there. So yes, I’m feeling pretty great, and thankful every day for my health. But it’s not perfect. And it probably won’t be for a long time.

You’re all done with treatment now, right?

Oh my gosh, you guys! Don’t you read this blog? I am totally NOT done with treatment. Every three weeks, I continue to check-in at chemo daycare and wait around 1-2 hours to begin my treatment. My port is then accessed with a needle and hooked up to an IV. It’s injected with saline, which leaves a gross taste in my mouth. Then I receive my medication for the next two hours. Then I go home and feel tired. I have been doing this for a year. And I am ALMOST done. In fact, Jan 31st should be my last trip into Chemoland, if you want to mark it in your calendars. That phase will be over, but I will still be taking my Tamoxifen each and every night and dealing with its thrilling and varied side effects (see above) for a looooong time. But it’s all a small price to pay for the chance to live, in my opinion.

Did you ever end up catching that mouse in your house?

No! The little guy is super sneaky and exceedingly intelligent. We have had a few sightings and have set up a variety of traps. Somehow, he is not falling for any of it. He knows what’s up. So for the time being, he is living with us. Really, he’s an ideal houseguest, as he mostly keeps to himself and stays out of sight and doesn’t ask for anything. But unfortunately, unlike with our other houseguests, our goal is still to murder him. Sorry, mouse. It’s a cruel world out there. As I have learned time and time again, sometimes life just ain’t fair.

Last week pre-treatment in the waiting room. The christmas tree was pink and adorned with cupcakes.
Last week pre-treatment in the waiting room. The christmas tree was pink and adorned with cupcakes and candy. Now that’s my kind of tree. Merry Christmas!

Stuff

Hi there! I don’t really know what this post is going to be about. Just stuff, I guess. So here’s some stuff:

If you’ve been following my Facebook page, you might know this first bit of news. I’ve started going out naked. Ok, no, not that kind of naked. But naked up top. On my head. I did it for the first time on Saturday. First to a street festival, then to see The Book of Mormon. I had initially told myself (during one of my many self-talks) that I wasn’t going to go out sans head cover for awhile still, until I really felt like I just looked like any other lady with short hair. But I’m an impatient person and I got tired of waiting.

At first, all I noticed was how cold the wind felt when it hit my head. Hair really accounts for a lot of one’s body warmth. After awhile, I kind of forgot about it, although it’s hard to ignore the stares that I get. My sister says they stare because they think I’m pretty, but I’m not sure I’m really sold on that. I think most people stare because they are trying to figure out what my “deal” is. And to be fair, I’d probably stare a bit too.

When I catch my reflection in a window or mirror, I can’t help but hear “Well, Sinead O’rebellion…” over and over in my head. If you have no idea what I’m talking about, you should probably watch more movies.


Sometimes, I look at other people and try to imagine what they’d look like with no hair. Or I see people with hair like mine, and I tell myself I look better than them. I realize that’s really terrible and I probably shouldn’t be admitting that out loud. But I do what I gotta do to cope. And if convincing myself that everyone else would look ugly bald is the ticket, then I’m going with it.

I’ve started taking photos to monitor my hair growth, because otherwise, I don’t believe it’s growing. Maybe these photos will help someone going through chemo, because I can’t tell you how many times I tried to find images of people’s post-chemo hair growth.

Today, bird's eye view.
Today, bird’s eye view.
Front view
Front view. I’m not really sure what colour my hair is at this point. Many people have grey hair post-chemo. I wouldn’t say mine is grey, but it’s definitely not the deep brown it once was. Kind of a mouse-y brown. But I imagine it is temporary.

You also might be interested to know that my body hair is returning in full-force. Just in time for summer, swimsuits, and short shorts. Yippee!

Today I had radiation #4. Only 21 more to go! Oy.

At this point, although it’s very early days, I still have no complaints besides some issues with mistakes in my schedule that hopefully will not keep happening, now that the staff know I am a force to be reckoned with. I’ve gotten pretty good at holding my breath with a tube in my mouth and a plug on my nose. Maybe after all of this, I can become a champion scuba diver. Does such a thing exist? I don’t know, but regardless, I don’t think that is my calling.

Today I also decided to pop into the lab to get my routine blood work done. My last couple tests had one level increase that prompted a new wave of panic in me, even though my doctors told me not to worry about it. But once I learned what this increase could possibly signify, it was hard for me to ignore it. So I was a bit hesitant to check my results this afternoon, but as mentioned previously, I am extremely impatient. So I held my breath and checked, and what do you know. Everything is back to normal. All green check marks. This is the first time I’ve seen everything be normal in awhile. And even though no one believed my previous results were anything to write home about, I still feel relieved. I like seeing those bright green check marks. Hello, I’m a straight A student. And patient. Anything less than a check mark is just insulting.

So, there you have it. Some stuff. More to come soon. You can count on it.

Radiation Update

Dear Diary,

Today I had my first radiation treatment.

I actually wasn’t anxious at all going into it. I think that my family and friends were more nervous about it than I was. Again I am quite astounded at how much I have changed since finding that lump back in September. I am slightly hardened, in a way. Acclimated to all of these treatments, and to the hospital walls. This isn’t necessarily a good thing, because I never want to get used to this as my life. But it does help me face each new challenge. Mentally, I do feel a lot stronger than I did before any of this started. Braver, I guess. None of it by choice, but nonetheless, a new me has certainly emerged out of all this mess.

As I waited for my treatment to begin, I chatted with an elderly man who has a tumor somewhere near his rib. He had had radiation previously, so he shared his experience with me. His doctors are considering chemotherapy as part of his treatment, so he asked how I fared with that. And there we sat, swapping war stories. Me and this 80-something year old man. Another cancer friend. You should know you’re still a very pretty girl, he said. I liked him. I hope he doesn’t have to do chemo.

I had two very nice radiation therapists bring me into my treatment room and set me up, making sure I was nicely lined up with the machine, thanks to my four little chest tattoos. Then they inserted my breathing tube. It was a bit more difficult than the simulation, due to the congestion I still have from my cold. But prior to beginning, one of the therapists remarked that it was quite impressive how long I had held my breath in the sim, so I knew I had to live up to my reputation and not screw it up. And I didn’t. I sailed right through it, and then it was over.

My new best friends for the next couple months. Cream, lotion, ointment, and aloe. Radiation 101.

Honestly, I was smiling through most of my treatment. I don’t even know why. There are lots of bad and scary things that can happen from radiation. Not usually immediate, but further down the line. But I guess I just felt happy to not be in chemo. To not be in pain. And to be kicking the shit out of my cancer, which has clearly become one of my favourite pastimes.

I met up with my sister after. Since she’s a medical student, she is often near the hospitals, which is convenient for me. I got some lunch, then we walked to the health food store, where I got a few items I needed, and some I definitely didn’t but couldn’t resist (chocolate quinoa crunchies, my new fave). And then I went home.

Radiation day complete. One down. Twenty-four more to go.

The main side effect from radiation is supposed to be fatigue. I can see how it would get quite tiring, even without the effects of the actual treatment. Just going to the hospital every day, back and forth, takes a lot out of you. I already don’t really feel like going tomorrow, and I’m just beginning. But I will push through it, and hope it doesn’t get too rough. I don’t want to anticipate anything bad happening. Maybe it will. Maybe it won’t.

For now, I am smiling.

Post-radiation. Feeling my new hair that's slowly growing in. So soft, like a newborn baby. A newborn me.
Post-radiation. Feeling my new hair that’s slowly growing in. So soft, like a newborn baby. A newborn me.