T-rage
Posted: September 26, 2013 Filed under: cancer fatigue, drugs | Tags: anxiety, ATLAS study of tamoxifen, ATLAS trial, road rage, roid rage, side effects of tamoxifen, steroid rage, tamoxifen, Tamoxifen side effects 22 CommentsI have a new Tamoxifen side-effect to add to my long list: T-rage.
T-rage joins an unpleasant cast of characters that feature starring roles in my daily existence. These characters take turns on center stage and compete for screen time. They jostle and nudge each other in their attempts to take over for real.
Who are these characters? The cast list is long, so bear with me. I’ll save the newest, T-rage, for last. These characters are all sponsored by my frenemy Tamoxifen. It’s my frenemy because it’s alternatively saves my life while also making me miserable. That life it is busy saving is increasingly becoming one not worth living.
Anxiety: because once you’ve faced down cancer, you need heightened worry and fretting, right?
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Bone pain: an ache so constant it only changes with the inexplicable flares that come along. Pain so acute I swear I can see my bones under my skin, because the pain illuminates them. I’d say I’m like a skeleton, except I’m not because of the extra weight that literally weighs me down, thanks to my frenemy Tamoxifen. If only I were a joyful, dancing skeleton.
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Joint pain: while I don’t envision the joints beneath my skin the way I do my bones, they hurt. A lot. Most of the time. And I don’t even want to think about Tamoxifen’s contribution to my bad knee. 
Hot flashes: because living in Houston–land of eternal summer and omnipresent humidity–isn’t enough to keep one drenched in sweat.
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Sweat, sweat, and more sweat. Like the clown car at the circus, the sweat just keeps coming.
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Dry skin: Why can’t all that sweat moisturize?
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Brown spots on my face: I’m aging at a quick clip. Not pretty on a banana, not pretty on me. 
Thinning hair: To go along with the dry skin and brown spots. Pretty. Real pretty.
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Peach fuzz: there’s hair where I don’t want it while that on my head is withering. By then end of my proposed 10-year course of this damn drug, I’ll have a full beard and a bald head.
Mental fogginess: huh? What was I going to say?
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Trouble concentrating: Ditto.
Sleeplessness: because the previous characters don’t wreak enough havoc, now there’s no escaping them.
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Fatigue. Crushing fatigue. As in, each of my limbs feels as if it weighs 50 pounds. As in, it’s a Herculean effort to get off the couch. As in, I’m not rested after a full night’s sleep. As in, this bites.
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Irritability. Major irritability. Sometimes I can barely stand myself. It is ugly.
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And, introducing irritability’s next-of-kin: T-rage.
You’re heard of ‘roid rage and road rage, and now T-rage. It’s similar to the other rages, in which something — in this case, Tamoxifen — causes a major-league reaction to a minor provocation. The sight of a Toyota Camry ahead of me in traffic (I hate Camrys). The guy conducting a shouting match on his cell phone in the middle of the grocery store (does anyone want to hear him squabbling with the unfortunate soul on the other end of that conversation?). The lady in the grocery store who leaves her cart in the middle of the aisle then gives me a go-to-hell look when I say “excuse me.” The asshat in the middle of the parking lot waiting for the person loading their groceries to pull out rather than picking another space. There are a hundred parking spots, but he’s gotta have that one. It’s a wonder I got out of the store without someone filing assault charges.
The T-rage sends me into certifiable-crazy mode in an instant. It’s not enough to just get around the Camry in traffic; I want to ram it. I’m not satisfied with shooting the cell-phone combatant a dirty look; I want to yank the phone out of his hand and shove it so far up an orifice he’d need it surgically removed. I’m not at all content to say “excuse me” to the inconsiderate grocery shopper in a shitty tone; I want to push her down and run over her repeatedly with her ill-placed cart. I don’t want to just shake my head at the fool holding up traffic in the parking lot while he waits for that close spot; I want to hurl my gallon of organic milk through his windshield.
Don’t even get me started on the moron in the mini van at middle-school pick-up yesterday who thinks the “No parking” sign doesn’t apply to her. No longer content to roll down my window and politely (or rudely) ask her not to park there, with T-rage, I want to do mean and horrible things to her.
I’ve got the T-rage. Real bad.
This. Is. Not. Good.
I know full good and well that I would not do well in prison. I’m much too fond of my own personal space, unlimited moisturizer, and fresh produce. Oh, and alcohol. Some inmates want a cake with a file or a shiv baked inside; I’d need my visitors to smuggle in booze.
Since prison is not a viable option, I need to get a grip on this T-rage. I need to figure out how to get through my day without murderous thoughts about the neighbors who can’t be bothered to pick up the crap-tastic freebie newspapers littering their driveways. The sight of so many neglected second-rate publications should not incite such violence. And yet, it does.
There are tips for dealing with road rage, and I’d suggest the best way to avoid ‘roid rage is to simply not take steroids. But I’ve not found any helpful tips on avoiding the T-rage. I’m gonna have to look for a 12-step program. Right after I punch someone.
The Pink Underbelly 
Well, I do not actually “like” what you are going through, but I appreciate you sharing with us. Your descriptions and images are overwhelming. I always knew you were strong, but now I realize you are indeed a true Amazon Warrior. You will get through this. I wish I had some tips on how to now go to jail when this T-rage hits–but you are finding your own path. With the right jury, you would get off! Hang in there. I vote for more booze. And I apologize for driving a Camry.
Yikes! I’ll keep my fingers crossed that I don’t see you on the evening news and be thankful that I’m at an oh-so-safe distance of 1,200 miles. Deep breaths and cocktails.
Let me know if you find an outlet. I beat up a cushion the other day, and that felt good – but at the height of my c-rage (cancer inspired rage) . . . sometimes I so want to get into a proper fight and just see what happens! ~Catherine
Wow…. This sounds exactly what I’ve been going through….and I’m not on Tamoxifen. We need to chat. I hurt all over, I’m tired, I’m irritable…etc. I was chalking it up to menopause (doctor confirmed). We need to commiserate. How can all our symptoms be the same? I wish I knew what was causing this for me.
I’m laughing so hard (but with deep and true understanding) that I almost wet my pants. Oh wait, you forgot to mention THAT side effect too. 😉 I’m so grateful not to be on Tamoxifen; I had researched the effects, and my oncologist thankfully came to the same conclusion I had; it wouldn’t change my numbers enough to be worth it. I know a woman just a few years older than us who jogged every day. Then along came BC and Tamox and one morning she was out walking and had a spontaneous bone break in her leg. Now she doesn’t even walk the neighborhood. Even without Tamox I’ve gone through menopause after the double MX– twice. The doctors all acted like I was crazy, but I found a few other women online who said just the extreme estrogen drop from breast removal also caused them to go into menopause, and some more than once, just like me. I don’t remember ever learning in biology class that the breasts also produced estrogen; but back in my day maybe they hadn’t figured that out yet– now it is a scientific fact but maybe our docs still didn’t learn it in med school.The other day I saw Suzanne Sommers talking about her BC and she mentioned that doctors generally get about 4 hours of training regarding menopause. I may not believe everything she says, but I think she’s right about that. Anyway, I think the hormone fluctuations are the same regardless of Tamox since I have all the same symptoms you describe. And at one point the rage was unbelievable, but it has gotten better or I’ve learned to control it better. I think it was mostly anger at what has happened and it is something we wear on the inside; most others aren’t aware of it. Even those who care about us and know most of what’s going on don’t really know the tidal waves of emotion we have to endure internally.
You pretty much cover it! My husband was counting down until I am off our “frenemy” just the other day…
in your more calm moments, I hope you are able to take even some comfort that the t-rage IS NOT YOU, that you are a wonderful person who has been through hell and back, and that fucking frenemy simply has you in a vice hold. I agree with others who express what’s going on is one huge tidal wave trying to get to a gentle lapping at the shore line so that hopefully, the ragged edges of hormonal havoc will smooth out to a better balance. I will think of you, and send you my most powerful vibes to quell the anguish and misery you are now dealing with. cry when you feel like it, get yourself into the understanding arms of those who love you and wish they could wave a magic wand and make it all better – and do whatever you need to be good to yourself. and keep writing – you do it so beautifully and you are helping others who are suffering the same upheaval – pounding out a good and delicious rant can be as much a relief as ramming a Camry – or maybe not. but at least if won’t land you in the pokey!
much love and light to help you find your way,
Karen, TC
[…] – something so many of us identify with. And anxiety joins a list of cancer characters at The Pink Underbelly blog this week alongside our old friends hot flashes, irritability, mental fogginess and fatigue. […]
This is great! I was on Tamox 2 1/2 years. I’d have one SE for a few months, it would go away and be replaced by another. Thought my body was adjusting. This summer, for two months, I felt like I had a constant fever (though my temp was below normal). BP was up and resting pulse was higher. I felt SOOOO tired. Woke up one day and realized it was the Tamox. I stopped taking it a month ago. Sympoms eve-so-slowly are abating. I went to Onco, who was switching me to an AI this month anyway, explained what was going on. He had little to say other than the AI comes with its own set of SE’s. I haven’t had the courage to take a pill yet. Was hoping to feel a bit of reprieve before getting on another unknown roller coaster.
I know I should be thankful and happy that there is a pill I can take. I know that. But the pill makes me sick too. No way out.
Just to let you know you’re not alone. Oh and PS, I hadn’t connected the rage thing until now!
xo
٩(●̮̮̃•̃)۶… Zoloft, dear, and L0Tz of it!!! The dose your PCP won’t feel comfy with, but the neuropsychiatrist will lob over the protective barrier between you. *´¨)
¸.•´¸.•*´¨) ¸.•*¨)
(¸.•´ (¸.•` ¤♥
My wife is 3 weeks post surgery for a double mastectomy and doing great.
I’d love to by her the “My Cupcakes Licked Caner” T- Shirt.
Any ideas where I can buy one? Thanks
Hey Mike,
My shirt came from mymottoz.com. I’m not sure if they still have them, but if not, you can create a shirt for her at Cafe Press or Zazzle or one of those type of websites. Best of luck to your wife.
Thanks and best of luck to you too. You have an amazing site.
Mike
[…] written about my complicated relationship with the drug many times; most recently about the T-rage I had been experiencing. Like poor Bruce Banner, I was one Hulk smash away from wrecking something […]
[…] worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that […]
Thank you thank you. You have no idea how much tamoxifen has changed me. I have experienced everything that you have. And was going out of my mind. So after 6 years i decided to stop taking it. It was either become a raging woman or gain my life back. I have never read anything on tamoxifen and never connected with other women on it and what it does. So to read what you have written is a blessing. I went off of it in January and still have all the signs that you speak of. I am thinking of doing a very strong cleanse guided my someone who is a specialist
Would you ever have a moment to talk. I can tell you with three kids and tamoxifen affecting me so badly I am amazed that I am still standing. Now that I am off
Of it I can see the light. But it still affects me greatly. Thank you for your writings and honesty. Contact me if you ever do have a moment to talk. We ca laugh at ourselves which is so important. We should wear shirts with a warning. Danger on tamoxifen and can take on an army
Great t-shirt idea!
I love you. I don’t know you, but I love you. You are the first person who has been able to not only understand what I’m feeling while I am taking “the satan drug” (as I have called it), but you have adequately and brilliantly put it into words. My doctor has taken me off of it three time (but, now back on for the 5 or 10 year run. Woo hoo!) I have friends that have taken, or are taking tamoxifen and seem to suffer no ill effects. When I tell them how I feel, they all reply, “that didn’t” or “isn’t happening to me”. I have literally thought I was going crazy. I’ve called my onco office on numerous occasions and they don’t seem to know what to do with me either. They just prescribe stuff that makes me not only crazy, but loopy and unable to function. My mother keeps pushing a hysterectomy like it will be the cure all. (She does love me and is really trying to help). But, I’m tired of surgeries, dealing with insurance, and paying thousands of dollars out of pocket. Is wishing for a year without a major health trauma too much to ask…? I’ve read further up in your blog and really appreciate your sharing what you’ve been through – financially, emotionally, physically, all of it. I had really begun to wonder if I was some sort of weirdo. Thank you. Thank you. Thank you. I can never thank you enough for how much you have helped me today.
Girl, I am so glad you found my post. I too was told by other women that they had no issues or side-effects. My advice is to tell your onco you need another option. If he/she doesn’t have another option for you, go get another opinion. Do not be afraid to switch oncologists! Whether to take these drugs is a very personal decision, and not one to be taken lightly, but for me it came down to the fact that my quality of life was considerably worse on Tamoxifen (and the 3 other drugs I tried). My onco wasn’t happy about me wanting to stop taking it, and it took me several conversations to make him see my point: that while I appreciate him trying to extend my life and protect me from recurrence, my quality of life matters — a lot! If you have any other questions or just need to vent, email me: nancyKhicks@gmail.com.
Hey livlovlaf8. I love you too!! And I don’t know you! I think it’s because you love Nancy.
As Nancy’s “Sherpa” I have to say that her oncologist very carefully went over the risks associated with staying on or going off tamoxifen before the “recommended” time was finished. Here’s the real scoop. It made a half of a percentage difference in life expectancy. I can’t remember exactly but something fairly ridiculous considering her Jeckyll/Hyde tendencies. So it was a no brainer as far as quality of life was considered. As her onco so eloquently put it, “You’re more likely to die of a heart attack at this point than breast cancer.”
My 2 cents: you have to discuss YOUR case with YOUR doc and bring someone who can hear the conversation with less emotions. Have that person ask what the bottom line is. When I questioned Nancy’s doc one percent chance made a big diff to him but 97 vs 96 percent survival didn’t seem like much to us when given the CRAZY that went along with it. HANG IN THERE!! Amy H.
Same with my onco– we discussed percentages and it wasn’t enough of a difference to make it worthwhile for me. I know a lady in my neighborhood who was a big walker every morning pre tamoxifen but while she was taking it she tried to keep up her walking regimen and got spontaneous bone breakage. She was fairly young, in her 50’s– bone breakage shouldn’t have happened to her. It’s sad for me not to see her walking each morning. Was a cautionary, helpful tale though, when it came “my turn”, so that I knew to research the downsides. I don’t think a lot of people are told enough about the downsides. Am glad I can still walk– it’s one of the few exercises I can still do (look doc,no pecs involved!!), and it helps my mind through all of this. Also, had a good friend who took 5 years of tamoxifen. She had just finished the regimen when her cancer returned. Her husband later said the docs told her at the time of recurrence they weren’t sure if 5 years does the trick or 10. Seems like the docs still aren’t sure on that one.
I have said those exact same words (I don’t know you, but I love you) to several BC bloggers who have had the courage to talk about some of the aspects of this crappy “journey” that most people don’t know about. It is such a relief to know that others have the same problems, I am not the only one. I am sooo grateful to people like Nancy who vent the frustrations for me in a well articulated way, and who let me know I’m not alone. Love ya, Nancy!