April 28th marks two years since my diagnosis. June 1st marks my second cancerversary of my surgery and subsequent treatment.  This upcoming  October 28th marks two years on Tamoxifen.

Let me be honest about Tamoxifen once again.  I don’t like it.   I have said it before and will say it again: Being on Tamoxifen sometimes is hard.  I have mood swings and hot flashes.  Some days I just feel a slight undercurrent of blah achy tiredness for lack of a better description.  Some nights sleep doesn’t come easily, and some days I hate the way my skin feels and looks.

Sigh.

Emotionally and physically some days Tamoxifen is just tough. Some days  Tamoxifen turns my emotions into the Moody Blues.  I seem to be feeling things at a more elevated level as this drug that will live in me for five years continues to settle  in.

Tamoxifen so screws with my sleep some days I am down right miserable some days as well as exhausted. And the hot flashes and night sweats  honestly suck. Some days, I feel like a hot mess.

Truthfully, I have never had a terrific self body image – that has nothing to do with breast cancer that has more to do with a mother that as much as I love and adore her from the time I was a tiny child one of her life lessons was her constant obsession with how people looked: their weight, are they sloppy, and so on.  She still obsesses over that and is especially still obsessed with how much people weigh.  (Phrases like “she just let herself go” and “all that soft fat” will be forever burned into my brain.)

So for me Taxmoxifen with its emotional and physical side effects is hard.  It is NOT insurmountable, but it is hard.  And I hate the way my skin is so dry now that the estrogen is getting sucked out.  I am lucky compared to some because I have not felt the lack of libido some women complain about, that’s all normal so far.  But the weight issues, the tiredness, and the hot flashes that some days just make you feel limp.  And with Tamoxifen some days are the days of the leaky bladder and feeling like you always have to go. And why is all this happening? Hello, your body is getting forced into menopause.

However, I have to be practical: I was going to hit menopause sooner or later, right?

So as much as I complain, would I ever just pop myself off Tamoxifen without the advice or counsel of my doctors? No way.  I might be my own best advocate, but I am no doctor.  And certainly not a fool. I know the interpretation of my oncotype test and low score is partially predicated upon the fact I will be taking Tamoxifen for five years.

Until yesterday, I never quite understood the concern on my oncologist’s face when we were first discussing Tamoxifen and I was a little scared about it.  Dr. Hartner looked me straight in the eye and said something to the effect of “You are going to take it, right?”  I mean of course, I was going to take it, I was far more fearful of my reality if I did not take Tamoxifen.

My doctors are monitoring me closely.  And that includes frequent visits to my gynecologist / endocrinologist , and to the lovely ultrasound /MRI people.  I had other issues prior to breast cancer – fibroids, cysts, ovaries that never worked right as a fallopian tube just filled with fluid.  Sounds gross, but at the end of the day it mean I would never bear my own children.  (I now have a wonderful step son, so God took care of me on that, didn’t he?)

So back to what made me sit here this morning in my “Cancer Sucks” T-shirt typing away furiously.

I am part of this breast cancer group.  And yesterday on the message board a woman whom I do not know and who is one of the many of thousands of members says:

I  secretly stopped taking it when I read the statistics .  I am not trying to be negative but it wasn’t worth the way I felt and the hair loss.

Ok, well I have not experienced hair loss with this, but that could have happened in regular menopause too.

She then continued:

We all do what we feel is right for us. I would really like “them”  to come up with something else. I opt for living also, doesn’t mean Tamoxifen is the answer.

Sweet Jesus.  This woman took herself off cancer meds without telling her doctors or discussing it with them first.  Sorry but that is not being your own advocate, that is being a little cray cray and playing Russian roulette with your life.

Then another woman pipes up and said she did it too.  I mean for real?  Sorry, I sound like a strident bitch here, but I think this is unsafe behavior. I mean seriously is this any better than having unsafe sex?

Also, what I have learned is that many of the other drugs given as alternatives (aromatase inhibitors) to Tamoxifen actually can be harder side effects-wise. To each their own, but how can you expect your doctors to do right by you if you come off meds they prescribed secretly?  They are plotting your course of care based upon the fact they think you are taking your meds.

I will freely admit I  just have a really hard time with someone who says they came off a drug not because she discussed it with her doctors but because of among other things stuff she read on the Internet that she did not discuss with her own doctors.

Her excuse seems to be in part that her doctors aren’t spending enough time with her.  Well hello, they aren’t psychic, so they won’t know things are wrong unless you tell them.  And given how overburdened some areas of medecine are that means sometimes you have to get in their face about stuff. Good lord.

This woman (who I am not trying to villify, it is just simply what she is doing scares the crap out of me) said that she did not feel guilty about being her own advocate and doing her own thing.  Had to scratch my head on that one – you are paying for health insurance and treatment so if you want the best for yourself how can you just sort of blithely engage in  risky behavior?

Can I say it again? Sometimes you have to engage your doctors on your own. Oncologists are often overwhelmed. And I’m sorry to sound strident or sound like a bitch but there is it a big difference in my mind between being your own advocate and being a fool. What she did was her choice, but there’s nothing glamorous about it, truthfully it’s irresponsible and high-risk. But it’s her life.  It is not a question of guilt, is a question of being smart about what’s going on with your own body. For this woman’s sake I hope removing herself off the Tamoxifen doesn’t do her more harm than good down the road.

And that my friends has nothing to do with “Big Pharma” and their “power.” It has to do with deviating from a course that is proven to extend the lives of breast cancer patients.  And for what it is worth, one of my friend’s mothers was one of the test patients for Tamoxifen when it was released to market all those years ago.  She is still alive today and kicking – full life no other issues.

I rarely share personal photos but I am today.  A photo of dinner with my sweet man, the love of my life and one of my best friends and her husband.  It was taken Valentine’s weekend.  In spite of it all, what do you see? I see happy people grateful for the gifts God has given them.

And but for the grace of God go all of us.  For me personally, I owe a lot of thanks to some amazing doctors.  Along with God giving me an amazing do over in my life.  So the moral of the story is, as much as I hate taking Tamoxifen some days, I want to live.  I want to live a very long time.  And I will fight for that.

So if you are out there having issues with Tamoxifen or fearing starting it: talk to your doctors.  Don’t just ignore taking it or just take yourself off of it.  Cancer is indeed an exhausting war at times, but you need to fight those battles.  So fight smart and reach for those stars.  They are attainable, trust me.