Tuesday, December 20, 2016

Death by Tamoxifen

I have really been struggling lately. A lot. At first I just thought it was my usual tendency to struggle, to hate life, rearing its ugly head. After all, it is the end of the semester, the time when my students push me to the brink of insanity, and it is Christmas, a time I have come to mostly dread. So there is a lot of stress, and as I've mentioned about 1,000 times before, I have the most pathetic level of tolerance for stress ever. I used to drive across town to ask a question in person rather than making a phone call, because phone calls are stressful. True story. (I've gotten better since then, thank goodness.)

But I feel like I am deteriorating, and rapidly so. I basically spent all of yesterday crying and hoping I would die. I kid you not. It felt like a true medical emergency. I have never felt that way before. I called my primary care doctor, but he had no appointments available. I called my medical oncologist, but he had no appointments available, either. I cried and told them it was urgent, but this did not make an appointment become available. I briefly considered going to the ER, but I didn't want to end up in a straight jacket in the psych ward, so I guess I haven't totally lost it yet. Thankfully I calmed down. Today, I feel flat, almost like a manic-depressive post-mania, except I've actually come up and not down.

And now I'm wondering - is this me, or is it the tamoxifen? After I took my daughter to school this morning, I crawled back into bed and couldn't make myself get out. After all, I didn't have to. 'Having to' is my only motivation to do anything these days. Eventually, I forced myself to get up because my husband was giving me weird looks. Instead of doing what I need to be doing (Christmas stuff), I went to see Dr. Google, who told me that this could very well be the tamoxifen. I figured the tamoxifen wasn't doing me any favors, but since I've been on it for over a year and haven't managed to kill myself, I didn't think that's what it was. And maybe it's not, but oddly enough, the idea that it might be is sort of comforting. I mean, yay, this medicine that is supposedly saving my life is giving me suicidal thoughts! What an awesome scenario! Apparently among those people who suffer from severe depression as a result of tamoxifen, the depression starts an average of eight months after they start taking tamoxifen. Oh, and Dr. Google also told me that most anti-depressants hugely reduce the effectiveness of tamoxifen because they are CYP2D6 inhibitors, and the enzyme CYP2D6 is what converts tamoxifen into its superhero status.

So here we are.

I'm going to discuss this with my doctor this afternoon. My husband begged and got me an appointment.

I wrote this elsewhere, but I am reposting it here now that I believe I may have written it in a tamoxifen-induced drunkenness.

This is how it feels.

In the morning, you wake up tired. You are always, always tired. It is dark outside, and it is dark inside. The darkness seeps into every tissue. You hit snooze. You close your eyes and try to go back to sleep, but when you close your eyes, all you see is blackness. The blackness swirls, like a tornado, and wraps around you, grinding at your heart and soul.

You try all your tricks. You take a deep breath in and tell yourself 'Blue skies in,' and try to imagine a blue sky with fluffy white clouds, entering your body, penetrating the darkness. But the blue sky isn't there anymore, only darkness. You breathe out and try to find the right words for what you are hoping to rid from your body, but you can't think of the right words, because your brain is fuzzy and at about 70% of what it used to be. But you can picture it. Some sort of insects fly out - locusts or flies - like in
The Green Mile. But they don't go far; they swirl around in the darkness that envelops you and find their way back in.

You hit snooze again. You pull the covers over your head, and you wonder what would happen if you just didn't get out of bed. Then you realize you don't really need to wonder, because of course you are going to get out of bed, because you are an adult and two small people depend on you to get out of bed. It is warm in your bed. You try to soak up some of the warmness, hoping it will melt the black away.

You hit snooze again. As you start waking up, you realize that not only are you tired, but you are also nauseous. You don't know if it is a hangover, because you have been drinking every night, because that used to help take the edge off of your anxiety. It doesn't help anymore, but you do it in anyway, maybe because you're on a self-destructive path, or maybe, just maybe, you are daring the cancer to come back and kill you. Or maybe it is the tamoxifen, and menopause. Or maybe it is your job frustrations, your relationship frustrations, your terror about the future of the country, that have put your GI tract into a permanent, dysfunctional knot.

Your radio goes off again. The classical music doesn't soothe you anymore; it irritates. You realize that you absolutely have to get out of bed. Your kids have to go to school. You have to go to work. You count to ten to try to psych yourself up. Your blood pressure rises. Your heart is beating so hard and so fast that your carotid arteries expand with such vigor, it feels like a twitch.

You finally get out of bed, but mostly because you have to pee. The bathroom is cold. Your closet is cold. This is a part of your new condition; you are always, always cold. You aren't sure if it is actually cold, if it is the medicine, or if the darkness swirling inside you manifests itself as a constant chill, a metaphor sprung to life.

You wake your kids up. You have given up on your daughter. It is too late for her. The painfulness of this realization eats at you, because you know her shortcomings are direct reflections of your parenting failures. You focus on your son. There is still hope for him. He has an inflexible morning routine that starts with him cuddling in your bed with you. It is one of the only reasons you can make it through the day. At the end of the cuddling, you make it through another 24 hours so you can experience the joy of cuddling the next morning. You feel ridiculous that your life has been reduced to this.

You take the kids to school, you go to work. You are such an expert at hiding how you really feel that no one can see the darkness that blankets you. You push the darkness inside you, deep, deep, deep, where no one would suspect it. But that has a price. It struggles to escape, eating your insides in the process.

You pick your kids up from school, you go home. You take everything out on your daughter, because she is an easy target. Your relationship continues to deteriorate; you know you are stuck in a bad cycle, but you can't help yourself. You say things to her you cannot believe you are saying. It doesn't even feel like you when you are talking. You lavish praise on your son. You know you should try to do the same with your daughter, but there is not much to praise. It feels like a cosmic slap in the face to be a mother to someone with whom you are so incompatible.

If you're lucky, you manage to grab a nap, because you are tired. You are always tired. Then you try to cook dinner, but it's hard, because you don't enjoy most foods anymore. Eating is mostly a chore. But you try, because otherwise your doctor will lecture you, and your clothes will become unwearable, and you don't want to have to buy new clothes.

Your husband comes home. You don't talk a lot these days because there is so much to disagree about, it's better to just hold it inside. You drink. You don't drink wine anymore because white wine tastes like gas and red wine tastes like blood. Instead, you drink a martini because the taste is somewhat foul, but at least you know it tastes the way it is supposed to.

You get the kids to bed, then if you haven't had enough martinis, you choose another sleep aid: cannabis, melatonin, Ambien. You may or may not take your tamoxifen. You are confused. Part of you thinks the tamoxifen is doing this to you, making you so miserable you don't even care if the cancer comes back. But then you wonder if you stop taking it and start wanting to live again, will you be sad if the cancer comes back?

If you're lucky, the sleep aid will work, and you might get a few hours of sleep. Sleep wraps around you, temporarily removing the burden of darkness. It is your only escape. You wish you never had to wake up. But you congratulate yourself on making it through another day, and look forward to cuddling with your son in eight hours.

1 comment:

  1. I am so sorry you are dealing with this. Tamoxifen wasn't kind to me either as you know. I can't believe how good I feel these days. I seriously feel like myself again. Talk to your doctor about the benefit of Tamoxifen, it may not be as much of a benefit as you think. Most oncologists use adjuvant online to determine this however the site has been down for a bit while they update it. When I went to the doctor a couple weeks ago he used lifemath.net which is available to anyone. Of course we are all unique and our risk/benefits of taking Tamoxifen cannot fully be determined by a computer program. You need to do what is best for you and your quality of life. I know for me that I am a much better mom and wife now I am off of it. I will never go back in it but I am considering trying the Lupron injections to medically induce menopause and then try the aromatase inhibitor drugs. I figure there are 3 of them to try and if they don't work for me then at least I know I tried everything before I give up completely. Hang in there, I know first hand how you are feeling and I wish I could help you.

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