It’s been a very long time since I’ve written in this blog. In a way, I suppose I’ve been avoiding it. Not because I no longer want to share this journey with you (Blech, I hate that word – “journey.” It sounds like a kitschy vacation. You "journey" to Orlando to hop aboard Space Mountain, you are dragged kicking and screaming into cancer treatment!), but because we have reached the point in the program where how I feel about how I feel is not so black and white anymore. Not so easily identifiable.
I feel good. Decent, at least. I am back at work full time. I am grocery shopping again (my happy place). I haven’t napped in weeks. My energy level is back to my pre-cancer days. My kids no longer tiptoe around me. Ruanita has stopped staring at me all weepy-eyed and sad. I’m me again.
Except when I’m not.
It’s hard to explain. In many ways, I feel a sort of weird kinship with soldiers coming home from war. Not in a strong, brave, honorable sense – I readily admit to being a weak scaredy-cat with questionable morals – but perhaps in a broken sense. I imagine we might be somewhat broken in the same ways. I imagine returning soldiers struggle with coming home to unchanged circumstances as a changed person. And that’s how I feel. In many ways, completing my treatment has been a sort of homecoming. I am stepping back into my life after a year-long absence. But it doesn’t feel like my life anymore. The circumstances are regaining a sense of normalcy (somewhat), but I am not the same person I was a year ago. I don’t react to things in the same way.
I am entirely too much inside my own head, which is a crazy place to be.
I want to be the same person I was before. I want to get excited about the same things. But my brain is waging a rebellion that is, frankly, quite annoying. My brain is completely disrespecting me these days. Giving me lip. (Yes, my brain has a lip. It also has a finger that it wags in front of my face and a mouth like a redneck sailor. And a voice like a howler monkey.)
I say, “Look! A 50-cent off coupon for butter!” (These are the things that used to excite my pre-cancer self). My brain replies, “Bitch, you could have died! Buy all the fucking butter, asshole!”
I say, “I need to get up. I have so much to do at work today.” My brain replies, “Bitch, you could have died! You deserve to sleep in!”
I say, “My children need my undivided attention.” My brain replies, “Bitch, you could have died! What about what YOU need??”
I say, “I need to watch what I eat. I need to be more active. Exercise would be good for my mental health.” My brain replies, “Bitch, you could have died! Eat all the fucking cookies you want and shut your goddamn pie hole!”
Ruanita doesn’t like it when I curse. She will tell you that curse words sound somehow…wrong…coming out of my mouth. Prior to being diagnosed with cancer, I rarely cursed. Partly because I was a goody-two-shoes rule follower in the style of Nelly Olson from Little House on the Prairie, and partly because I never felt I was clever enough to properly utilize the colorful plethora of curse words available in the English language.
I have friends who have elevated cursing to an art form. Curse words roll off their lips like paint from Van Gogh’s paintbrush. They manage to blend and meld expletives into masterpieces worthy of the Louvre. Their swearing is at once curt and florid. They are exceptionally proficient profaners.
I am not one of these people. At least I wasn’t one of these people pre-cancer.
I no longer care if I am clever. I no longer give a fig about the artfully rendered phrase. There are some circumstances that just require a good, long, breathy FUUUUUUUUUUUUUUCCCCCKKKK.
Cancer – specifically this period post-treatment when I am coming to grips with the fact that everything is over and nothing will ever end– is one such circumstance.
I guess what I am trying to say is – life is hard right now.
Because things are mostly back to normal, everyone expects me to be all better. Everyone expects me to be whole. And I am. Don’t get me wrong. I am living my life. I am happy. I am thrilled to be here. To have my kids. My wife. My life. It’s just not always easy.
What people don’t realize is that normal is no longer normal. People joke that I no longer have the “cancer card” at my disposal. But cancer has affected me in ways that will never go away. My safety net is gone. We all have that sense that bad things can’t happen to us. We know intellectually that it isn’t true. But emotionally, we buy into it hook, line, and sinker. We believe we are immune. This belief keeps us safe. It keeps us sane. It keeps us from having to deal with everything that is scary and unsure about the world.
With cancer, that sense of safety disintegrates. And it’s impossible to regain that naiveté once it’s gone. It's like trying to get your virginity back - it ain't gonna happen, honey. I now know bad things can happen to me. And I am completely convinced bad things will happen again.
So I wait.
Wait for the other shoe to fall. Wait for the cancer to return. For every twinge. For every ache. Every pain. I wait and watch and wonder when it will be back.
And I have a lot of aches and pains these days. Because my cancer was hormone-receptor positive, I am being treated with a drug called Letrozole (Femara) that suppresses my body’s production of estrogen. It’s quite effective in preventing cancer recurrence in women with hormone-receptor positive breast cancer. But it comes with some pretty nasty side effects.
The main side effect is joint and muscle pain. I have a LOT of joint and muscle pain. Some days I am fine, but more often than not, I am hurting. My hips, thighs, knees, ankles. Everything from the waist down aches. I hobble around here like a 90-year-old woman. My hands also ache. My wrists. My fingers. Most of the time, I manage. Some days, I am in tears.
I have spoken to my doctor about the pain. I have the option of switching to a different medication – a drug called Tamoxifen. Many women find that the joint and muscle pain goes away when they switch to Tamoxifen, but the drug comes with its own set of side effects. And it is a teensy tiny bit less effective than Letrozole.
So less pain, but maybe…more cancer?
Whichever drug I land on, I will need to take it for 10 years. So I am looking at quality of life versus medication efficacy issues. Can I handle this level of pain for the next 10 years? Can I handle the risk of not handling it? My oncologist says that it is my decision. He says that Tamoxifen is a good drug, but Letrozole is a teensy bit better. but the pay-off is less pain. Less pain is something I could TOTALLY get behind.
And teensy doesn’t sound like much, after all.
I see my oncologist again on June 5th. He has said that, by that time, he will feel like we’ve given it a good old college try and we can call it quits and move to Tamoxifen if I want.
If I want…
What do I want? I feel like I am entirely unqualified to make this decision. I mean, who the hell am I? I’m not a doctor. I’m just a weak scaredy-cat with questionable morals, after all.
So if you hear me exhale a long, quiet FUUUUUUUUUCCCCKKK in the coming weeks, you’ll know why.
Don’t tell Ruanita.