… years are recommended for the tamoxifen.
My daughter asked me tonight: "How much longer do you have to take this cancer medication?"
This tells me that it's hurting our family.
We talked about alternative medicine. We talked about the legalities in this country.
The money wins over the cure.
Maybe I can try half doses. Because I'm still scared, like everyone else.
But I can't go on being this insane for another 4 years.
I'm going to see if I have enough turmeric to make This. We take turmeric daily, but this looks really powerful. Black pepper? I may just spread this shit on toast.
Weight struggles (gained 5 last night, for really no reason - I had a few marzipan pieces after dinner… is that enough to put 5 lbs on someone?). Increasing joint pain. Osteopenia. False menopause. A multitude of grey hair. Insanity. The shortest fuse on the planet. Dry skin which affects my musicianship. Eyes are starting to go fuzzy (after I spent all that money on lasik!!!) Did I mention - insanity???
I wish I knew what my mom went through and had done. She had some real insane periods in her cancer life, but they didn't have tamoxifen back then. I wonder if she had a hysterectomy. I remember her going bonkers and gaining weight. She, the woman who was 97 pounds at her wedding. The perpetual size extra small. It was too weird to make sense. I know she doesn't want me to end up like she did. I am guessing hormone identity theft, much like mine but MUCH worse. Why didn't people talk about this stuff with their children back then? I am seriously considering contacting her old hospital and seeing what I can do to get a hold of her records. HIPPA violation? They didn't have those back then. Do the records even exist? It was nearly 25 years ago. I'll pay for them. I don't care. They're a part of my history, and of my daughters. We deserve to know.
ps. Fuck you, Cancer.
I've been reading your blog for some time now, but have never commented. I like it because, unlike others spouting thanks to some god or putting the rainbows and unicorns spin on how cancer has somehow made the person better, you come across as much more honest about the feelings that go along with cancer and its treatments. So, kudos to you for that. Also nice to read a blog from someone else living in NYC. Maybe it is an attitude thing.
ReplyDeleteI'm commenting now because I wanted you to know you are not alone, especially with your feelings regarding Tamoxifen. I was diagnosed 1/20/12 and started taking Tamoxifen on 4/7/12. It was brutal for me - had symptoms much like yours. Being a person in a creative field, the brain fogginess will hurting my work. I had a friend that started taking it 1.5 years before I did and she never had the side effects like mine. I slogged through 18 months before I called it quits after a really frank discussion with my oncologist. I am lucky enough to have very minimal risk of local recurrence without T and am really only worried about a new cancer in the other breast. I might be making the wrong decision, but when people who know say how radically different I seem off T, one part of the decision was probably right. All I can tell you is really get the onc to give you a very complete breakdown of your risk and decide what is important to you. Looking at cancer discussion boards isn't always helpful because you'd get a lot of alarmist commentary from people whose pathology may have been way worse than yours to begin with. Every case is different. If I had a child, I may have stuck it out - don't know. But whatever you end up choosing, know that if you've done your research, it's the right choice for you. There aren't any guarantees anyway - with or without Tamoxifen. Have peace with making your decision. I will certainly by hoping you find something that you can live with and that makes you happy.
Diana - thank you so much for your comment. Sometimes I feel so alone. Except for the Unicorns who keep me company. ;)
ReplyDeleteBrain fog. Oh my God. It kills me in my creative career, but also as a mother. The physical symptoms hurt my career as well. I have a fairly high risk of recurrence or movement of the stupid cancer. But, living life in pain, moody, etc. - is it life at all?
I've done so much research… I'm so tired. Tired of it all. Tuesday I go in. I scheduled acupuncture very early in the morning, and asked for a "bravery" treatment. I need to tell my oncologist that I really want to break up with Tamoxifen.
Thank you again for your comment. It really means the world to me.