Posted in breast cancer, tamoxifen


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


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 Uncategorized



I wasn’t expecting to get to this milestone so quickly after getting to Onederland. I’ve lost four pounds rather quickly after a week of catered food and little sleep, but nonetheless, I stepped on the scale this morning and I’ve lost 40 pounds! 

Tomorrow marks the third month since my surgery. I had hoped to hit this milestone before then and I did it! 

Still in disbelief over how far I’ve come so fast. I’ve worked hard at eating right, eating enough, hydrating enough, and exercising. I’m still not in any routine I’d like to be yet, but I’m getting there. 

I’m still fighting nausea and fatigue from the Tamoxifen, which is also keeping the weight loss at what seems like a crawl. I will face that challenge another 8 years, so I just have to keep plugging away. I know I can do it. 

Meanwhile, if anyone has some size 14 or 12 clothes they don’t need anymore, let me know. I’m running out of clothes.

Posted in Uncategorized


I blinked a few times when I looked down at the scale this morning. I couldn’t believe my eyes. 199? Could it really be? 

It’s been decades since I’ve weighed under 200 pounds. So grateful to have reached goal #2 in 11 weeks!

Posted in Uncategorized


I weighed myself this morning and so far I’ve lost 27 pounds! This is the craziest ride I’ve been on!

I went to the gym Saturday morning to ride the recumbent bike.  It felt good to be back at the gym. I saw the water aerobics class already in progress and decided that was something I wanted to try.

This afternoon, I went to buy a bathing suit. Normally, this is the bane of a woman’s existence, especially mine, but if I wanted to be in this class I needed something that fit. I went to Academy to get a nice bathing suit, although I doubt I can wear it for more than two months or so.  

This process was not nearly as painful as it was in years past, especially since I fit in the clothes, workout gear, and bathing suits that Academy has to offer.  So I bought my first Speedo bathing suit, and hope to be in class Saturday morning!

Posted in Uncategorized


A month ago, I let a doctor rearrange my innards so I could lose weight once and for all. It’s been a roller coaster ride of sorts, an experiment on the grandest of scales. I’m still learning my new stomach’s limits, not just with volume, but types of food. I haven’t always done well with this venture, but I’m learning. 

As of today, I’ve lost 23 pounds. I lost 20 rather quickly, plateaued, then started losing again this week. Even with the plateau, the weight loss has taken me down a size and I can look in the mirror and see results.

My plan is to go back to the gym next week for cardio and as soon as the doctor releases me, I will call my trainer and let her whip me into gear. I know once I’m back at the gym I will lose weight even faster. Sometimes I can’t believe it’s actually happening, but it is.

I’m still waiting for all the supposed “energy” to arrive. I am still on Tamoxifen, so maybe that’s what the holdup is. I do, however, feel better than I have in a long time. A long, long, long time. I will try to remain patient and diligent and when the energy does come I will put it to good use!

In the meantime, I’m eating tiny meals, taking my vitamins, and taking care of myself!

Posted in Uncategorized


Well, Monday has come and gone. I had my surgery! I have entered the two week period of “What did I just do to myself!” and the endless sipping of liquids.

The surgery went well. After surgery I had an extremely difficult time for a few hours with the nausea and being paler than usual. It took whoever brings up the meds an hour and a half to get me the anti-nausea meds. I was not happy about the response time at this hospital. They did turn the temperature up in the room, which helped, and I finally settled into sleep.

Dear Laura, who has been with me now through two surgeries, delivered me to the hospital in the morning darkness and was sitting by my bed for hours. Finally, she went home and I settled into getting woken up every two hours to walk, take meds, vitals, etc.  I did walk for the first time later that evening, and again at 3 AM and more frequently thereafter. 

I couldn’t have water until I passed the dye test on Tuesday morning, which was a bit of a surprise to me. Not even ice chips. The nurse brought me swabs to keep my mouth moist. After doing the breathing treatments, my throat already sore from the surgery, I was ready for those swabs!  

The nurses began saying I would go home Tuesday if I passed the dye test – my doctor was infamous for sending patients home as soon as possible to recoup. I had all my tests extremely early that morning and then around 1 PM the doctor came in and told me I could go home.

The discharge nurse then told me I had to fill the pee pan to a certain level before SHE would let me go home. Keep in mind my stomach now only holds four ounces of anything and I had been denied liquids until about 11 that morning. 

I had gathered a bit of water, Gatorade, sugar-free lemonade around me and started sipping. And sipping. And sipping as much as my tiny pouch would hold. Output was slow. I’ll be honest, it was 4:30 before I made the offering satisfactory to my nurse! 

Finally, I was able to come home and climb into my recliner and start sipping more liquids. I took my pain medicine as soon as Laura brought it to me. I must have drank it too fast, because I had my first experience with dumping syndrome (cramps, nausea, and a fever spike). I’m glad I got that out of the way – I do NOT want to go through that ever again and now that I know what it feels like, I will walk the straight and narrow!  (which is not easy to do alone and out of it).

My college roommate, Becky, helped take care of her sister, Sarah, when she had the surgery a few years ago. Becky was her drill sergeant and made sure she did all her breathing exercises, drank her fluids, etc. They both made the offer to help me out and every day they have been chatting with me, and the accountability is wonderful. If you’ve ever seen the Beckster Stare of Disapproval you don’t ever want to see it again! I’m so grateful for them and their help! 

Now I need to sip. I can hear Becky saying that from far away. Just keep sipping. Just keep sipping. Just keep sipping…

Posted in Uncategorized


I’m down about 8-9 pounds on the high protein pre-op liquid diet.  I stopped begging people to bring me a bucket of chicken (kidding) on Thursday. I finally am experiencing ketosis, which basically means my liver is shrinking and my fat is burning.  I am no longer “hungry.” 

I can understand why people fast. It does bring a clarity of mind. I have also experienced hunger, true hunger, for the first time in recent memory. It made me think of the little girl I sponsor in India and how I never want her to ever know hunger again. To not be able to satisfy that ache in the belly for an indefinite period of time – I don’t even want to think about it.

One week to go until surgery.  I’m going back to work tomorrow for the week in between and I’m happy to have a reason to get out of the house – to feel useful. One more week of no food whatsoever, then the real test begins.

I’m happy, truly, to be attacking the obesity problem in my life, to finally be pro-active in my health. I have become a recipe diva (imagine doing this while not eating) and am ready to face the challenge of rebuilding my shrinking body. 

I’ve got this.

I’m sure the next week will fly by. I can’t believe I had surgery four weeks ago and haven’t been in my regular routine since. I know I will look back at this season and see many threads I can’t at the moment. 

The tapestry will be beautiful and it will be mine.

Posted in Uncategorized


I have started the pre-op liquid diet. 3-5 shakes a day of two flavors (vanilla and orange cream). Don’t know how much weight, if any, this particular part of the journey will remove, but the shakes will help me prepare my liver to move out of the way for surgery (by shrinking).  

Am I hungry? After the last few months eating to prove a point, of course I am. I am not above chewing cardboard at this point…but I won’t because I’m determined to make the adjustment. One day, I will be able to eat solid food again – anything I want – and I plan on being quite the food snob by then.

I can’t believe I’m having surgery in 12 days. 12 days to change my life for the better forever!