Tag: tamoxifen

Posted in breast cancer, health

YES, MAMMOGRAMS HURT, BUT…

Posted on by sassysheisme

Get your mammogram!

I get asked often, “does it hurt?”

Yes… BUT

It does not hurt as much as 2nd degree radiation burns during treatment.

It does not hurt as much as the old school c-section style hysterectomy I had to get because I had to take meds to keep the cancer from returning that had the side effect of possible uterine cancer.

It does not hurt as much as a biopsy.

It does not hurt as much as a lumpectomy.

It’s cheaper than cancer treatment.

A mammogram led to early detection and I know that saved my life. It was worth 4 short, intense squeezes that take less than 10 minutes!

Posted in breast cancer, health, S. A. D., tamoxifen

S. A. D. AND TAMOXIFEN WITHDRAWAL

Posted on by sassysheisme

I am not a big fan of the fall time change.  To be honest, I’m not a fan of time change for daylight “savings” at all.

I grew up in Indiana, where until recently, Daylight Savings Time did not exist. Until I moved to Houston, I had no idea how to change the time on any appliance or vehicle that I owned. The only reason I knew that time had “changed” everywhere else is because network television shows came on later or earlier.

Though I’ve been off Tamoxifen now for 2.5 months and the improvements have been slow but steady, I must now prepare myself for the inevitable effects of S. A. D. – Seasonal Affective Disorder.  I know it’s a good thing, a very, very good thing, that I will not be on Tamoxifen while I deal with SAD (dealing with both made winters hell), but I am not looking forward to what the time change brings for me.

A good friend reminded me that SAD was coming and I needed to adjust my expectations of how I’d feel free from Tamoxifen to accommodate what SAD does to me.  She’s known me for twenty years and was even my roommate for a time so she has experienced SAD me firsthand.  Come Spring, she reminded me, I will really notice the difference between Tamoxifen Me and Free-From-Tamoxifen Me and I needed to be patient with myself (which she knows is a huge challenge for me).

Many people in my life have been waiting for Free-From-Tamoxifen Me.  I feel a bit of pressure to perform differently to adjust to their expectations – that I will snap back to the person they remember before I had cancer.  I’ll be honest, I don’t want to be the person I was before I had cancer.  The Cancer Crucible was awful and merciless, but it changed me forever. Now that I’ve accepted that change, I can’t go back to Pre-Cancer Me. I wouldn’t even know how if I wanted to do so.

One difference during this SAD season is that I will not be on Tamoxifen, which I hope will reduce the fatigue and depression that usually hits me this time of year.  I have my artificial sunlight lamp at work and I am moving during the day at my standing desk and I am going on vacation, which will provide a tremendous boost.

Acknowledging my limitations is more difficult than people who don’t have physical or emotional limitations could possibly understand. I am comfortable in my own skin, in my own brain, in my own emotional state. I confront my limitations head-on and try to stay ahead of the oncoming storm. Most of the time, I’m victorious. Sometimes, I am not.

Most people love me anyway and appreciate the effort I still have to exert to go to social gatherings, but there are some who still roll their eyes when I decline an invite.  These same people have made snarky comments to me when I do show up at events or gatherings.  I chalk that up to their immaturity and lack of empathy, but it’s very difficult for me to let those comments slide when I’ve made significant effort that they cannot possibly understand just to show up.  Those comments and judgements make me less inclined to put in the effort if I know those people will be in attendance.  I don’t need the drama, especially if I’m already fatigued.

I have more energy now, that’s a fact, but that doesn’t mean I will jump back into the deep end of the social event pool, especially when some types of events or people at those events suck the energy right back out of me.  I’m still going to be choosy about what I choose to do and whom I choose to do those things with.  It is what it is.  Even if all the planets align and it’s the perfect event for me to attend, sometimes, I still can’t and I have to let myself stay in timeout regardless of whether anyone understands that or not.

That said, I want to hang out with my friends, but I need to dial back the expectations for myself – expectations of others be damned. I’m easing back into the fast lane at my own pace, with my own goals, with my own agenda.  The only person I have to please is me. It’s amazing how true that statement really is.

Next week, I will be on vacation with my best friend. I have been looking forward to this for countless months.  I am thrilled that I will be able to pour more of myself into this time together than I have been able to over the past few years, but I will admit, there are going to be times when I am not going to be able to keep up and I know she will understand that.  She’s worth any effort I have to reach deeply for and I know we will have a great time together. Her understanding is worth its weight in gold.

I think the reason I have adjusted to this aspect of my life is because I have adjusted the expectations I have for myself. There is no huge gap between what I want to do and what I can do. I am happier than I’ve ever been because I’ve made that adjustment – and others would be happier if they’d adjust their expectations of me as well.  Their happiness, however, is not my responsibility.  I can’t change others, I can only change me.

Posted in breast cancer, health, tamoxifen

LIFE POST-TAMOXIFEN, 2 MONTHS

Posted on by sassysheisme

Today marks the end of my second month of freedom from Tamoxifen.  I can honestly say that stopping the consumption of such a life-altering drug has been one of the best choices I’ve made in a long time.  I appreciate most having my brain back and having a boost in energy.

This week I have needed my brain to be at it’s best, and it has responded beautifully. If I was still on Tamoxifen, I would no doubt be curled up in a corner of my office sobbing from the stress of not being able to respond. Instead, I have been able to keep up with this week’s blistering pace.

The joint pain has decreased quite a bit. I don’t doubt that the Tamoxifen hasn’t fully left my system, but every day I get closer to feeling fully myself again.

I look forward to the coming months as I continue to regain bits and pieces of me that I’ve lost.

Posted in breast cancer, CANCER, tamoxifen

DEAR TAMOXIFEN, THANK YOU AND GOODBYE

Posted on by sassysheisme

Today was the big appointment with my oncologist during which I planned to tell her, vehemently, that I had broken up with tamoxifen, and that I had already noticed a significant improvement in my quality of life. I had my argument planned in my head, had all my answers, research and sass ready. To say I was resolute would have been a huge understatement. I was at peace with this decision and I was ready to live with it and all the consequences.

As it usually happens with me, whenever I am prepared to defend myself or my position – I didn’t have to at all.

My pain, the side effects, everything, was acknowledged.  Then she told me that in the last year Texas Oncology has heard the pleas and complaints of the patients under their care and have rolled out an entire program to help patients with their side effects.

I couldn’t hide my surprise.  The last time I’d sat in that chair, I was tearfully pleading for help with the nearly debilitating joint pain (among other side effects) and was met with a blank stare and “that’s not my specialty.”  I felt that, given that experience, I was in for a lengthy debate to justify my deep, ingrained notion that I was due a better quality of the life that was spared.

Apparently, according to Time Magazine, the entire breast cancer industry is rethinking how they treat DCIS cancers (like the one I had).  One patient, Desiree Basila, made this statement:

“What I am doing is not foolproof,” says Basila. “I know that. I also know life is finite and that death is unavoidable. For me it came down to the quality of the life I want to live. I don’t want to be tired and bitchy if I can avoid it. And come what may, I think we really hurt ourselves by trying to just not be dead.”

Just trying not to be dead.  

That last sentence stuck with me, and was in my arsenal of defense against the “Tamoxifen machine.”

After explaining how they’re now offering help with side effects, she looked me in the eyes, saw the resolve, and then said, “For your type of cancer and your stage and the size of the tumor, you’ve taken it long enough.”

She glanced down at my chart again.  “Your quality of life is too important. You don’t have to take it again.”

I was stunned.  I almost started crying, but it would have been an ugly cry, so I sucked it all in as hard as I could.

She agreed with me.  I didn’t see that coming!

She stressed good eating, weight loss, continuing my natural therapies (though I know she still doesn’t quite agree with that), and concentrating on improving and enjoying my life.

I cried on the way home, grateful that 1, I didn’t have to take tamoxifen anymore, and 2, that I didn’t have to argue the point.  I can’t tell you how gratifying it is to stand up for myself and have it rewarded in the way I wanted, but did not expect.

I will end with this: Tamoxifen, I do thank you for what protection and prevention you have given me.  I will not, however, miss you, be sentimental about our time together, or yearn for the life-sucking “good ol days.” I am more than happy to leave you behind!

Posted in breast cancer, fearless, tamoxifen

DEAR TAMOXIFEN, IT’S NOT ME – IT’S DEFINITELY YOU

Posted on by sassysheisme

I’ve been off the Tamoxifen for a week now and I’ve already seen improvement.  The joint pain has lessened, and today I did a series of stretches that felt so good.  I will see how I feel tomorrow.  Lately when I’ve tried moving around quite a bit I hurt like hell the next day. I’m hopeful that trend is about to end.

Tuesday, I was hungry. Not ravenous, but the feeling that I hadn’t eaten in a while was present.  My weight doctor wants me to eat more calories in a day and quite honestly, I just haven’t felt like eating at all.  Maybe I will now.

I’ve actually slept a bit better, my brain is firing better, and feel less foggy. I am looking forward to getting back to more photography and writing, both of which are satisfying and fun for me.

I had a physical on Friday and my blood pressure was perfect, and she said I was in good health for the most part.  She could see something was different and I told her I was no longer taking Tamoxifen. At first, she was surprised, but she calmly asked me why, she listened, and she suggested before I make a clean break to get a second opinion.  She also warned me that my oncologist would be angry and upset.

I fully expect my oncologist to be angry and upset, but I am resolute. I already feel so much better that I can’t imagine willingly taking a carcinogen daily again.  I can imagine by my appointment in October that I will feel so much better that I will have a hard time taking her anger seriously.

I have reached out on several support groups/forums and I am getting quite a bit of support.  It’s a good feeling to know I’m not alone, I’m not insane for taking back control of my body.

Oh, my dear Tamoxifen, this breakup is going better than I thought – and it’s you, it’s definitely you.

Posted in breast cancer, tamoxifen

DEAR ONCOLOGY DOC, I’M BREAKING UP WITH TAMOXIFEN

Posted on by sassysheisme

My post Saturday got me to thinking about why I take a medication that has cost me so much.

I started taking Tamoxifen because I was scared.  My oncology doc told me I had to take it if I wanted to keep breast cancer from coming back.  I blindly took her advice because I’d just finished radiation therapy and had 2nd degree burns and I didn’t want to go through that ever again.

I was warned that there might be some side effects, mostly nausea and bleeding a lot if I got cut.  That was it.

Nausea was just the beginning.  At each visit with the oncology doc I filled out endless paperwork describing other side effects like vision issues, joint pain, intense fatigue, weight gain and much more.

This oncology doctor said, “tough it out,” and “it will pass.” My favorite was, “talk to another doctor about that. It’s not my specialty.”

The other doctors did what they could but, as they pointed out, “you’re taking Tamoxifen so…” or, my favorite, “I have not heard Tamoxifen does that so I can’t help you.”

My dear, fierce oncology doctor, I stopped taking Tamoxifen on August 22, and I am never taking it again. In five days, the joint pain (while still present) has already lessened and to my surprise, Tuesday I was actually hungry.  Yesterday, I was able to concentrate and had many creative thoughts and made a presentation I am very proud to distribute.  That hasn’t happened in a long time, and I expect over time for my side effects to dissipate.

I plugged my particular cancer details into a treatment calculator provided to me and taking Tamoxifen for 5 years vs. not taking it at all, would give me a whopping WEEK, that is SEVEN days of benefit.  Granted, I know this info is not 100% accurate, but it is a guide doctors use for treatment.

A week vs. four years of lost time due to being slammed by side effects.  I was so angry, I was shaking. So I did what anyone would do, I sought out a Tamoxifen support group.  Many people in the group are ok with the Tamoxifen, but twice as many aren’t.  Many of us have had the same struggles, others have had it worse than me.

A significant number have this in common:  the doctors either don’t care or they ignore side effects completely.

If my oncologist had said, “I hear you, these side effects are awful.  This is what we can do to ease them,” I might be inclined to trust her and keep taking it. She just blew me off – all she cares about is following this regimen no matter what.  She’s a leader in her field. Then she told me I’d be taking this carcinogenic medication for five more years.

I’m sorry, doc, I’ve had enough.  I’m not scared anymore, not of you, not of not taking Tamoxifen.  I feel burned by Big Pharma.  I feel like I’ve been an experiment and a statistic to add to a long list of numbers.

When I’d calmed down, I knew I’d made the right decision.  It’s my life. If breast cancer is going to try to have a second go at me, I do not believe taking Tamoxifen 10 years will prevent it.

Now, I’m dealing with Tamoxifen withdrawal and I’m looking into natural ways to combat my estrogen.  Thanks to friends like Shan and Anastasia, I’m getting good, solid advice and I feel confident in this decision.

I was talking with my BFF Tuesday night and with tears in her eyes she told me she was proud of me and that she was go glad to “have my Bestie back.”  That hit me like a ton of bricks.  While I know I haven’t been myself the last four years, to know that there was a part of me she missed, that was huge.  Truth be told, I’ve missed that part of me, too.

Dear oncology doc, I’m breaking up with Tamoxifen.  I know you won’t like it, but it’s my life, and I’d rather have quality of life than a week of “guaranteed” benefit from taking toxic waste every day.

As I detox from Tamoxifen, I feel hopeful, much more than I ever have, and I look forward to the days and YEARS to come.