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.
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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