Posted in breast cancer, health

YES, MAMMOGRAMS HURT, BUT…

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

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

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

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

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

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.

Posted in breast cancer, tamoxifen

SIDE EFFECT UNIVERSITY

August 21, 2011 – Started taking Tamoxifen on a five-year schedule.

August 22, 2011 – Wished I could stop taking Tamoxifen.

April 2014 – Told that I would be taking Tamoxifen on a ten-year schedule due to the findings of a new study.

August 22, 2015 – Weighing the side effects (that most doctors tell me it’s impossible to have the rare ones) vs the benefit of taking the drug.

I work with a lady who had breast cancer years ago who experienced many of the same side effects as I do.  After a couple of years of wrestling with the side effects, she stopped taking Tamoxifen. Her stage of breast cancer was higher than mine and she also had chemo, which I did not.

She stopped taking Tamoxifen.  My doctor acts as if this is not an option and will not be considered – ever.

The study of taking Tamoxifen 10 years said this:

The researchers found that taking tamoxifen for 10 years produced more reductions in breast cancer recurrence and death than taking tamoxifen for 5 years. In the 10 years after the study started, the risk of recurrence was 21.4% in the continuation group compared with 25.1% in the control group. Death from breast cancer was 12.2% in the continuation group compared with 15% in the control group.

3-ish percent. Five more years of side effects vs 3 percent. 

A partial list of side effects I have experienced from taking Tamoxifen:

  • chills
  • confusion
  • cough
  • dizziness
  • lightheadedness
  • lower back or side pain
  • pain or swelling in the legs
  • sweating
  • weakness or sleepiness
  • bloating
  • joint or muscle pain
  • loss of appetite
  • nausea
  • red, irritated eyes
  • unusual tiredness or weakness
  • hair loss or thinning of the hair
  • headache
  • pain
  • pinpoint red spots on the skin
  • trouble concentrating
  • trouble with sleeping
  • unusual bleeding or bruising
  • swelling of the fingers, hands, feet, or lower legs
  • weight gain or loss (in my case, gain)

I do not want breast cancer again.  I will commit to the initial five year plan. I do not, however, want to be 52 when I finally get my life back, if indeed that will actually happen.   I do know that when I was off Tamoxifen for a month because of surgeries I was having, I felt better than I had in a long time.

After that, I dove into gathering information about side effects of Tamoxifen and how to combat them naturally.  I have a team of doctors, none of whom will help me with this task because one is committed to me taking Tamoxifen at all costs, and the rest of them do not understand the drug at all – only what they read – and they discount my pleas for help.

Turns out, when Tamoxifen takers communicate among each other, I’m not alone in experiencing these impossible or not very probable side effects. Still, doctors are so intent on patients taking this drug that they discount the side effects and will even deny they exist to keep a patient on this drug.

I do realize taking Tamoxifen is entirely up to me.  My doctor can insist on it, but I can choose what I take and put in my body. My doctor’s scare tactics of keeping me on the drug are deeply embedded, but 3%… I can’t get over trading five more years of my life for 3 more percent of success after a low stage, no-chemo, no BRCA gene cancer.

My next appointment is in October.  I will make a decision by then.  I want my life back. Maybe, just maybe I can get that 3% back with weight loss and health that not taking Tamoxifen will hopefully provide.

I am ready to graduate from Side Effect University.  I have my doctorate.

Posted in breast cancer

NATIONAL CANCER SURVIVORS DAY

Today is National Cancer Survivors Day!

In April, I had another mammogram, another “clear” mammogram, which declared me cancer free for the fourth year in a row.  I do not, and will never, take negative results from a mammogram for granted.

I find it difficult to balance my gratefulness to still be a living, breathing member of the human race, and the sadness, and if I’m honest, guilt, that I feel for still being a living, breathing member of the human race when so many cancer warriors don’t get the opportunity.  Even before I had cancer myself, I lost family and friends to cancer, and even now, through every diagnosis someone receives, and some losses and funerals of people way too young to not be living, breathing members of the human race.

The renewed life I’ve been granted is not without its challenges.  I still loathe Tamoxifen and all the things it does to my body while preventing cancer’s return.  I’m disappointed in all the doctors that refuse to acknowledge the side effects I’m having and trying to deal with outside of the medical world – their only concern is that I’m alive, not with the quality of my life.  That does not mean I am not allowing Tamoxifen to rule my life, it only means that I’m living with Tamoxifen and dealing with the side effects on my own.

The biggest problem I’ve had is joint pain and the need to detox my body constantly.  I’ve also stopped losing weight and have gained 10 pounds back from the original 50 I lost – something that my weight loss doctor would like to crucify me for. I wholeheartedly disagree with him on all points because I am doing everything I’m supposed to be doing within my ability right now. He refuses to acknowledge any part of my life or the things I am doing outside of his office.  He also tries to act as if he’s an expert on cancer survivors and all the meds I’m on that clearly state weight gain is an issue.   I’d like to slap him because he is overweight, but he can be happy about it, yet I cannot be happy that I’ve kept off 40 pounds for two years.  His reverse psycho-sorcery doesn’t work on me and I know it frustrates him. I’m frustrated enough for the both of us.

Since I’ve been detoxing more often, I’m sleeping better, but still not that nourishing sleep I crave. That doesn’t help with the weight loss either. I’m caught in this cause and effect loop that I can’t seem to break, but mark my words, even if it takes YEARS, I will break it.

The one thing I’d like to remind people who haven’t had to deal with chronic illness, pain, fatigue or cancer, is that a cancer survivor’s life never really goes back to “normal” or back to the way their life was before cancer.  Life cannot exist as it was before – either physically, mentally, or emotionally.  All of our experiences are different – but our common bond is, that though life has been altered forever, we are still living it in our own way, on our new timetable, with our life’s new boundaries.

The best way to honor a cancer survivor is to understand, as much as you can, their new reality and allow them to live it as best they know how.  Support them as they try to figure out what works for them so they can live their lives as fully as possible. Acknowledge to yourself that they can no longer live life on your terms or the terms you were comfortable with. It’s not about you.

Hug your cancer survivor today. Remind them that you are so glad they are still with you. Allow them to celebrate however they choose – solemnly, excitedly, prayerfully, boisterously, or with a nap.

Posted in breast cancer, death, Suckuary

THE BEST DEATH?

This week, I came across this article reporting on a blog post in which a doctor stated that cancer is the best way to die and society should stop wasting money trying to cure it.

Of course, as a cancer survivor, I was livid. I couldn’t even come up with a way to describe how his words made me feel other than, “KMA – kiss my ass.”

As I read his blog post describing various ways to die, I still couldn’t form words to comment on it.  Doctor Luis Bunel compared various end of life ways people die and chose cancer over dementia, sudden death, and organ failure.  I understand he was contemplating ways to die and, at age 62, he may be closer to death than I am.  We all contemplate how we want to leave this world, that’s a normal part of life, especially after passing the invisible, perceived halfway point of typical life expectancy.

The point is, Doctor Bunel, none of us gets to choose how we leave this earth, or when, (though some do by taking their own lives).  By stating there’s a better way to die surely guarantees that won’t be how you get to the end of your line.  I do believe that our wishes really aren’t considered when it’s our time to die.  Death is an inevitability, sure. Being able to shove that inevitability back one more day is a gift.

I’ve buried way too many people I love because of cancer.  Each of them fought what Doctor Bunel would term the best way to die. They fought with their own strength, they fought with medicine, and they fought, most of all, to stay with the people who love them.

“An even more horrible death,” he wrote, “is one that’s kept at bay by the miracles of modern medicine, a death that never ends. In the name of Hippocrates, doctors have invented the most exquisite form of torture ever known to man: survival.”

One more day with my brother would be worth everything,  I guarantee you, doc, that I don’t think his parents, siblings, wife or kids would say otherwise.  If my brother thought what he was enduring was torture, I guarantee you, he would never have said a word. He fought until his last breath to remain with us and if it was torture, he was willing to take it. Every. Single. Day. For one more moment.

Survival does not equal torture. 

I know with my own cancer, I was nowhere near death.  I didn’t have major organs failing because they were being eaten away from the inside.  I am nearing four years cancer free, and while I do not see breast cancer making a comeback, I GUARANTEE you, Doctor Bunel, if it does, I will fight it with everything that is in me to do so. I will embrace the modern medicine, and if that one extra day is torture, I will celebrate it.

This morning, I saw on ESPN that Stuart Scott, a long time host of Sports Center, had passed away from cancer. His fight reminded me to never give up. He fought cancer for almost a decade. He FOUGHT it.  He left behind two daughters, two daughters that I’m sure he felt the alleged torture was worth.  Watching the tributes to him from his coworkers and friends brought me to tears.  He inspired them in many ways and he will be missed.

None of us knows exactly when or how we will die.  What we do with the time we have is important.  It is not a great sin to want to live longer despite our quality of life if we want to live.  Cancer treatment and research costing billions is not a cancer patient’s issue, it’s a larger issue of the greed and inefficiency of the healthcare system (that’s another post). Regardless of the cost, most people are not in a hurry to die, even if it’s painful, because most of us have something bigger than us to live for.

I’m still not completely calm about this article. I know it’s not personal, but yes, I took it very, very personally because the miracle of modern medicine let me have moments with my brother and mother that I wouldn’t have otherwise had.  I also a member of a family of cancer survivors who are still here, living full lives, because of the advances in medicines that fight cancer, all of whom would agree those billions of dollars spent on cancer research are not wasted.

Survival does not equal torture.  Not by a long shot.

Posted in breast cancer, tamoxifen

DEAR TAMOXIFEN, HAPPY ANNIVERSARY

tamoxifen

 

For three years, I’ve been taking Tamoxifen, a medication that will help keep my breast cancer from returning.  The first two years, I dealt with some very unpleasant side effects, including nausea, fatigue, headaches, eye pain, and mood swings that made me certain I was going insane.  

My doctor would confidently tell me that she judged the benefits of taking this medication far outweighed the side effects.  There were days I begged to differ.

This year, since my RNY gastric bypass, the nausea has been much less. I am grateful for that.  I have 7 years to go before I will be allowed to stop taking this medicine, but I’m grateful for it.  

3 down. 7 to go. Happy Anniversary, Tamoxifen!