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! 

 

Posted in breast cancer, femininity, travel, travels, weight loss

FIGHT LIKE A GIRL, KICK ASS LIKE A WOMAN

I have passed the middle of one of the busiest years of my life. I am tired, for sure, but I’m so grateful to be on this journey. 

My travels started in March with a trip to Maui, and with work, I started in May with a trip to Philadelphia, followed by a trip in mid-July to Los Angeles, and I just got back from New Jersey and will leave again for Los Angeles again this Sunday. 

Fortunately, I am fond of traveling, even for work. I just bought a new suitcase for the half dozen or so trips I have left this year, and the half dozen or so I will have next year. 

Daisy, the best suitcase ever!
Daisy, the best suitcase ever!

Daisy already has road wear, but whatever.  She is easy to maneuver and she is easy to spot and forces me to pack lighter. I love my work shirts – they help me pack lighter too. They don’t wrinkle either. 

I am on the quickest pace I’ve had since I had breast cancer. I’m not kidding – sometimes I wonder where the energy is coming from (right up until the point it absolutely disappears).  I am balancing two huge projects at work – which I’ve likened to juggling two burning bowling balls and trying not to get burned – and I’m surviving.  

I say “surviving,” and I am. Not always as gracefully as I’d like, because, well, this is me, and I have hit bumps in the road and found myself crying in frustration when I physically and mentally collapse in exhaustion, but I’m still going. Still getting better. Still figuring out what life is supposed to be like after the breast cancer/hysterectomy/RNY gastric bypass clean slate. 

I haven’t lost a pound in about 6 months. That’s been about as frustrating as anything. I’m still on the medicine that makes me gain weight, but I didn’t think I’d come to this plateau so soon. I’ve fluctuated the same 5 pounds since March. Up/down. Up/down. I’ve not gained any weight back per se. My measurements are still the same or even less. I feel no pressure to move the scale, but I’m still frustrated. I refuse to go back to being morbidly obese. I refuse to return to what was.  Getting the scale to move again is not my focus right now, but if it did, I’d be thrilled.

I have zero chances at establishing any sort of routine between now and next June. This is where I am challenged to find routine in the spontaneous demands of my job until these projects are finished.  I’m trying to see this as an opportunity rather than a hinderance. I know I am capable. I can do this.

Finding balance has never been my strong suit, but I’m getting better at it. I hope to have more tales to tell as the time goes on, more tales where I’m not just fighting like a girl, but kicking ass like a woman. What got me through the challenge of breast cancer must mature into something that can sustain me as I keep moving forward.

I fought like a girl and won. Life has gone on. Time to kick ass.

Posted in breast cancer, Uncategorized

THE KOMEN WALK 2013

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Today, I walked my second full Komen for the Cure event in Houston with my co-workers and friends. The day started early, before dawn. Anyone who knows me knows I am dedicated to something to get up that early!

As a breast cancer survivor, the Komen Walk has a different meaning for me than others that participate in this event. Others walk for people they lost to breast cancer, to support the cause, or just to participate.  For me, the Komen Walk is a way to celebrate my cancer’s demise and the effort of rising up afterward and moving forward.

As the thousands gather at the starting line to walk, they are excited to get moving and tackle that 5K.  Some are somber as they remember those they’ve lost, the ones they are there to honor.  Today, I was reflective of how far I’ve come and the people I was there to represent (see above photo).

The walk was a bit more challenging for me than I thought it would be. I’ve lost almost 50 pounds, I am working out and I prepared by hydrating this morning and eating a power bar. I was ready. I do as much cardio in the pool each week. After completing the second mile, however, my legs were like jello and I was running out of steam.

Our pack of walkers had spread out and I was lagging behind, trying to keep a steady pace.  The sun was hot, and the temps were climbing into the 90’s.  Hydrating with such a small stomach is a new challenge.  I am grateful Dora and Glenda slowed down a bit and kept me going.

Along the route, I was greeted by several volunteers to cheer me on as well. I tried, as much as possible, to thank those volunteers for coming out and doing something so important. Encouragement is so needed during an event like this. Whenever the volunteers heard the words, “thank you,” they seemed to perk up a bit. They were out in the hot sun with us, too.

A lady ran up behind me and saw the sign I was wearing that said, “Beating cancer runs in my family.” She said she’d buried 7 family members from breast cancer and if she got it, she knew her fate. I started to ask her if she’d had the BRCA gene test but she jogged off, alone.  Another pair of ladies in front of me wore a photo from 2011’s walk with their friend JoJo, who died last summer. This is what breast cancer does. This is what breast cancer is.  Breast cancer robs people of loved ones and friends.

When I reached the Survivor’s Row, where they called my name and how long I’ve been a survivor, I was so grateful I’d made this journey again. After our group dispersed Reagan and I went to the Survivor’s Celebration so I could pick up my Survivor’s Flag and some swag.

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By the time I got home and soaked in a hot tub, I was exhausted! I am so grateful I had this experience again and it is truly different every time!

ImageThis is me after the race as we went to lunch. I am as tired as I look in this photo, but very happy with where my journey has brought me. I am a woman on a mission. Breast cancer didn’t defeat me, and every day I’m grateful and more determined to live life to its fullest!

Though this particular work event was not about me, I am so grateful to have had a team to walk with this year! Thank you MAN Diesel & Turbo for allowing this and for Alejandra Bohorquez for putting the team together!

Posted in about shae, allergies, bariatric surgery, breast cancer, health, relationships, weight loss

ONE OF THOSE DAYS (I want my life back)

I had a low grade fever most of the day, and though I wanted to be home in bed, since I have dismally few sick days I pushed myself to go work. I had wanted to go out tonight and be with friends, but the fever didn’t leave.

I cried all the way home. I am more than frustrated with the state of me right now. I am a breast cancer survivor, 1.5 years now, and though I got to live I didn’t get my life back.

Don’t read that as I have nothing to live for, I do. I just never thought that this far down the road I’d still be trying to get my legs steady and back under me. I’ve spent all month wishing the color pink didn’t exist as it is a bright pastel reminder that though I’m a survivor, I’m still trying to find my way back to myself.

It’s incredibly difficult to express how I feel, and even more difficult when I can’t even figure out what to say. People who have not had breast cancer or an illness that totally changes their lives have no idea what I’m going through. For them, I no longer have breast cancer. Everything is great, right?

WRONG.

I don’t feel sorry for myself. In fact, I swim in a pretty steady stream of optimism most of the time. As I wait for weight loss surgery that will hopefully turn some health issues around for me, impatience is an unwelcome nag – a constant reminder that I’m not where I want to be.

I’m actually ill more than I let on. I catch everything these days. Compound that with my daily dose of allergy havoc, and my body feels lousy most of the time. I am saddled with a profound tiredness every day. My brain, when not having Tamoxifen/Lexapro delays and lost moments, is actually pretty active and eager to move life along.

I know many people whose bodies do not keep up with their brains, wishes, and hopes. I am now one of them. Throw aging on top of that mess and I feel ancient in my bones. I’m not ready to relinquish my spirit to that notion.

Doctors and friends promise me that after surgery, the energy will return as the weight falls off. I will sleep better. I won’t have to worry about my heart’s current issues. My plantars fascia won’t have as many issues carrying weight around. My knees will stop hurting. I won’t be sick all the time. I might get to stop taking a pill or two.

I want to believe all that. I really do. On days such as this, however, I just can’t, especially when I feel truly alone right at this moment. I know that will pass, but I can’t tell you how much I miss presence, something I had a satisfying portion of before cancer. Now, I know I don’t have enough. Thank God for the friends who meet me more than halfway when I need it and especially for the ones who come 90% of the way when 10% is all I have to give.

I’m so thankful for the few faithful that are ever-present, the ones whom I’m never out of mind when I’m out of sight and the ones who are never out of sight when I feel out of my mind. I love you all and I’m grateful you are on this journey with me.

Now for more meds and begging God for a good night’s sleep.

Posted in bariatric surgery, breast cancer, femininity, food, tamoxifen, weight loss

DISTORTED IMAGE (and being comfortable in stretch-marked skin)

I took this photo before I went in for my first meeting with my bariatric surgeon, Dr. Davis, last Friday. I was waiting outside in front of the elevator bank since the office staff had not returned from lunch so I decided I wanted to take a “before” photo.  My hands were shaking because I was slightly nervous, and this is how the photo turned out.

When I saw how fuzzy it was, I immediately considered it a success. I look at myself and I do not see this person at all in this way. It’s a distorted, fuzzy image of me.  When I see photos of myself I am in disbelief. Who is that chubby person? When I look in the mirror, I see a beautiful, shapely person. I do not see fat arms, two chins and hips wide enough to double as an inflated flotation device.

I can’t pinpoint when the transition happened.  I used to look in the mirror and see fat everywhere. Fat, fat, fat. Big girl. I didn’t want short hair because it would make my face look fat. I would never, ever tuck in a shirt, because people might see my fat butt or stomach. Fat calves. Fat arms. FAT.

My hair is now the shortest it’s ever been and I love it. I I love my sassy hair and sassy glasses and sassy attitude. I don’t care that the jeans I’m wearing right now are size 20. I wear sleeveless shirts and I don’t care what my arms look like.  When I look in the mirror, I see beauty.  I see a woman who is comfortable in her stretch-marked skin.

The decision to have bariatric surgery has been a difficult one. I have fought having the surgery for a year. So when I sat down with Dr. Davis, I did so because I finally decided to do whatever it takes to improve my health. In three months or so, I will have the surgery, and then the real battle will begin.

I understand now why bariatric patients go to support groups. I cannot believe how unbelievably cruel people can be. Everyone has an opinion, and though most have been supportive, there have been a few who have ignored my boundary and let me know how much they are appalled by my decision.  Those negative, judgmental people want me to know I don’t have enough faith, that I am just lazy, and my weight loss doesn’t count because I won’t have to work for it.  Other people have let their feelings be known in less direct ways, but the sentiment is still there.

Not one of those people has walked in my shoes or lived my life.  They don’t know my medical history.  They don’t realize that when you are taking medications that make it impossible to lose weight, losing weight is, indeed, impossible.  Instead of encouraging me, or lifting me up, they’ve chosen to throw stones and discourage me in sometimes hurtful ways.

Negative comments tell me quite a bit about how much research or knowledge those people have about obesity and the hope this surgery gives. If they had done any research at all, they would know many bariatric patients have tried everything to escape their prisons of fat and surgery is the end of the line. Bariatric patients are choosing a life-altering, path-changing procedure and it is by far more difficult to admit they cannot achieve their weight loss by themselves than to repeat the cycle of diet insanity.  After 25 diets that don’t work, why not try something else?

I’m a breast cancer survivor. Last summer I had second degree radiation burns in a very tender area. I went to work every day.  I got treatment every day for 33 days.  I was exhausted and in pain every day.  I walked one of the toughest paths I’d ever had to traverse.  I didn’t take the easy way out then, and I’m not choosing an easy path now.  Life after surgery will be one of the biggest challenges I’ve ever faced. And I will face it.

My body is broken, but my spirit isn’t. I’ve asked Dr. Davis to help me put my body back together and getting it working optimally again. The next three months of anticipation of the surgery will hopefully fly quickly as I prepare physically and mentally for the aftermath of surgery – which will be a battle every day for the rest of my life.

I’m grateful for the people who lift me up every day – in person, via email, text, Facebook, Twitter.  I need your support so much as I go on this journey.  You know who you are, and I love you all.

Posted in bariatric surgery, breast cancer, health, tamoxifen, weight loss

HAPPY ANNIVERSARY TAMOXIFEN and by the way I’m having weight loss surgery #bcsm

On August 21st, I celebrated my one year anniversary of taking the cancer-preventative drug, Tamoxifen. I’ll be honest, it has not been an easy year, and I’ll be more honest, I am not happy that I have four years left to take it. This drug, however, will help me not get breast cancer again, so I take it, grudgingly.

This far into the post-cancer journey, I am by no means back to normal or happy with where I am in the recovery/moving on process. I am, however, taking steps to ensure that I do move on, and I do more than recover. 

Last month, I went to see my new allergist, Dr. D. Dr. D has really helped me so far, and while I am still allergic to most everything I tested for 7 years ago, I am happy to report I can eat chicken again! I have eaten so much chicken in the last three weeks, I may cluck with joy.  I am so happy to have chicken as an option again.

Dr. D is going to start me on shots in a couple of weeks. I really like her.  Unlike my last allergist, she listened to me, asked questions, and wants me to be a well-rounded person. Dr. D, coincidentally, studied Tamoxifen in college.  I’ve been able to get a lot more information and support about this med than I have in a while.

So while I’m getting that part of my life under control, I now am onto the next phase of my new life. A year ago, when I started taking Tamoxifen (which makes your body think it’s pregnant and holds onto every pound), my oncologist said that since fat stores estrogen and my cancer was estrogen positive, I needed to be about 100 pounds less than I am now. I told her that was highly unlikely any time soon.

“Then we need to talk surgery,” she strongly suggested.

“Surgery?”

“Weight loss surgery. Bypass, I’m thinking.”

At that moment, I was not ready to hear that I needed surgery.  I told her no way and she left it alone for the time being.

In April, at another checkup, my oncologist noted I’d only lost 7 pounds. I felt estatic over that number considering how tired I’d been.  She was not amused.  She mentioned surgery again. I was not amused.

I started doing research on bariatric surgery and what it would entail. I began to deal truthfully with myself as well. I’d been overweight since I was 8 years old and for various reasons, I had not been able to lose weight and keep it off, and in the last 5 years or so, losing was nearly impossible.

I talked with three friends who have had this surgery and the consensus seems to be this:

  1. Bariatric surgery is not the easy way out.
  2. It’s a long, very long journey.
  3. Bariatric surgery takes a complete life change to make it work. It’s only a tool. The rest is  up to the person.
  4. SO VERY WORTH IT!

I have talked with a few more friends who have had either banding surgery or other forms of weight-loss surgery. All say it was difficult, but worth it.

After a lot of self examination, I decided that if I was going to get to this magical land on the other end of the scale, then I was going to need help.  I rarely ask for help. In fact, having to admit I needed help with my weight was a big barrier. A friend told me that knowing I needed help was, “discernment.”

Last week I had another followup with my oncologist and I told her I was ready to have the surgery. She seemed surprised but glad I was taking this seriously, as I was back up 6 pounds and in one year had only lost a pound. I was just happy I hadn’t really gained weight beyond that.

She referred me to the Davis Clinic here in Houston (thedavisclinic.com).  Dr. Garth Davis had a show on TLC a few years ago called, “Big Medicine.” He is the surgeon I am going to see on September 21. I am excited to have this moving forward and ready to get this part of my life under control.  Not only will I get the surgery, I will be seeing a psychologist and a dietician.

My plan is to live a long life. Getting the weight off will help bring that to reality. I know that once I get the weight off, with God’s help and with support I can keep it off.

I have already gotten many comments and negative feedback. Mostly from skinny people or people who lose weight easily or people who can’t imagine themselves going without their favorite foods for a very, very long time.

I am drawing the boundary line right here and now.  Keep your negative comments to yourself. I do not need to hear your negativity. It will not make me change my mind. I’m going forward with this.  If you can support me that would be wonderful, if not, I can appreciate standing up for what you believe in, and I will miss you.

I will be updating quite a bit more now, as keeping a blog during this transition will be very helpful. I’m getting excited about the positive changes I’m making in my life and I’m ready to be the healthiest I’ve ever been!

Posted in breast cancer, health

THE DEPTH OF A TATTOO NEEDLE

I finally decided to get my second tattoo.  Since I had breast cancer last year, I knew this tattoo would be an Ebeneezer from that journey. I wanted it to be visible this time (my first one is on my back) so it would be a constant reminder to be strong, courageous and grateful.

I think what made me finally ready for this tattoo was the total defeat I felt this past week and how deeply I felt I needed to draw a line in the sand before I passed the point of no return.

My new reality is a slow-spinning blender, which makes it all the more painful. Needless to say, I am still struggling emotionally from having gone through the breast cancer ordeal and then the Tamoxifen ordeal immediately following it which has subsided a bit but still has taken over my life.  My health keeps spinning out of control and each time I see the doctor, we have new maladies to discuss. I am beyond frustrated with how tired I am all the time and how I’ve been unable to put my life back on track after all this time.

Wednesday was the epitome of me, frustrated, spinning out of control, unable to reign my chaotic emotions back into place.  I felt so defeated and so awful and so bitchy and I hate those days.  Then, I got home and received the news that someone I love like a daughter had lost her baby. I just flopped down on the floor and sobbed.

I wish I could tell you that I’ve had some spiritual epiphany as I’ve walked this part of my journey, but I can’t. Believe me, I’ve tried to get to that point as much as it has been expected I’d get there.  I have not had that pink ribbon spiritual aha moment that so many people have had and gone on to write books about their wonderful spiritual journey and all they’ve learned.

Don’t get me wrong, I am grateful to God for the healing I have had and I know he’s been with me this whole time. I just feel like my heart is full of broken glass because so much of me was shattered last year.  I’m confused, tired, and broken. I can’t seem to find my new path yet and I’m so very frustrated.

Meanwhile I feel like I’m in an endless maze and someone thought they’d be clever and not leave any cheese at the end.  I’m lost and there is no reward.

That’s why yesterday I called a friend and we went to the tattoo parlor. I needed to mark this part of my journey, permanently and I seem to find inspiration in the depth of a tattoo needle.  I chose the butterfly because it is a symbol of hope to me, that beauty lies beyond this cocoon.  It all came together when Jeremy, the tattoo artist handed me his drawing and I knew that was what I wanted.
I am grateful for my life, and once I figure out what I’m supposed to do next, I know I will be ok. I have a very visible reminder of God’s faithfulness on my forearm.

Posted in breast cancer, health, photography, Yahweh's fingerprints

A NEW YEAR POST CANCER: THE ART OF SPOON MANAGEMENT

I went to see my beautician last week, the wonderful Nora who has cut and colored my hair for almost 10 years.  I asked her to do something that absolutely irritated her.  I asked her to cut my hair very, very short.

At first, she didn’t understand why a “bob” cut wasn’t going to be enough. Finally I defaulted to an analogy that a friend of a friend had used before to illustrate how she has to handle her energy management.

“Let’s say I have ten spoons of energy a day,” I told her as she tried to reason with me that short hair was not going to…cut it…so to speak.  “My meds take 3-4 spoons of energy away a day. That leaves me 6-7 spoons of energy to get dressed, work, cook, clean, run errands, and try to get out and do something once in a while.”

I could see she had begun to understand when I said, “I need one of the spoons back from my hair. Don’t make me cut this myself.”

I’d finally convinced her I needed my hair to be wash & go and that short was truly the only way to accomplish this task.  Honestly, I think Nora thought I would be unhappy when she finished and that’s the reason she didn’t want to cut my hair.  I felt desperate for this haircut and was thrilled for the results.  My hair is short, wash and go, and it looks great.  I knew Nora would come through.  She’s too talented to give me a haircut, no matter what length, and have me walk out unhappy. Has never happened. 

I had an overwhelmingly positive response to my hair, which reinforced my drive to get my energy management under control.  I know many people worse off than I am in this department, who charge through what they have to and fall exhausted into bed every night. Anything frivolous and extra just doesn’t happen often, or at all. 

I’ve spent the week thinking about my spoon (energy) management.  I know I can do this.  Prioritizing is essential if I hope to pursue more photography and other creative pursuits.  I want to challenge myself to a photo a week in 2012 to build my portfolio and my skills.  To do this, I have to save some of my spoons and choose not to do other things.  It’s difficult, at times, to make those choices, but choose I must.

Everything boils down to this: I have to accept what is, and make the most of what is. If anything 2011 taught me that if God chooses, he can take me in an instant, and I wouldn’t have to worry about any of this anyway.  God also taught me in 2011 that, though cancer is a complete game changer, it does not mean that the game is over, or that I still can’t accomplish what I dream to accomplish.

All that’s changed is that I have to manage my spoons better to get the results I want.

I don’t make New Year’s resolutions often, simply because I choose goals that are based on feelings or superficial notions.  I have decided to choose to pursue actual obtainable goals in 2012.  I need to be able to check things off the list and make everything I’ve been through this year seem a distant memory.

In 2012 I will:

* keep myself open to new adventures and manage my spoons to maximize the adventure

* learn as much as possible about photography and editing and not buy any new equipment (deals are off if I get to B&H this year)

* read more, for pleasure and business

* do what I need to do so that breast cancer does not return so I don’t have to go through this again (and this includes many things, like make friends with Tamoxifen, which has had another side effect manifest itself this week!)

I think four goals is enough right now (making friends with Tamoxifen may have to be a goal in itself).  I think that may use all the spoons I can find.  What ultimately needs to happen is that just having four goals and utilizing spoon management and accepting my new reality has to be okay.  I think that may be my biggest adversary – my mind.

My mind is still here, still relatively sharp, still active. It’s the body that can’t keep up right now.  In order to move forward I have to work harder to do it, plan better, manage my spoons better.  I will accomplish quite a bit if I can do these things.

Welcome, 2012. I am going to learn to manage my spoons and maybe even learn to play them to make beautiful music while I’m at it.

 

Posted in breast cancer, health, Yahweh's fingerprints

IS THAT STEAM FROM A BIG TRAIN OR JUST BRAIN FOG?

Yesterday one of my friends compared Tamoxifen to Liquid Drano running through the body. That’s a great way to put it.

This week was overwhelming in terms of emotional and physical stress.  I won’t go into all the details, but there have been people lost to people I care about, year-end work stress, personal stress, and physical stress.  I was so tired Thursday that I fell up the stairs when I got home.  I was so tired I could hardly lift my feet.  I haven’t been that tired in a long time.  My friend Jene’ calls it TBT – Tired Beyond Tired.

I’d like to blame Tamoxifen for being so tired, but I can’t entirely.  The stress isn’t helping.  I sometimes feel like I’m walking on a train track and at some point there’s going to be a big train steaming toward me and I won’t be able to get out of the way.  What frightens me is that I feel a bit ambivalent about it.

I have better days since I’ve been on the Equalizer. Trouble is, my body is still adjusting to the pharmaceutical cocktail that keeps me going.  My brain still isn’t back on track. There are days I feel like my brain is in a thick fog. Other days I am so tired I can’t think.  I want to be able to attend everything to which I’m invited, but most of the time I end up at home exhausted.

Exhausted and FRUSTRATED.  

I was encouraged by many people yesterday and today, in person and online. Words are such a powerful medium in my life that to receive them in such a way from people I love gave me some much needed energy. I need to keep moving forward, even if I feel like I’m crawling.

I have three short work weeks in a row, and that will help.  I have some goal reassessment to do and a plan to execute.  I want my photography and writing to improve and grow and even if my body can’t keep up, I will make sure my mind will.

Right now, I have to give my permission to be Sassy, who is on Tamoxifen, and be whomever that happens to be.  I need to embrace what is…and take back control of what will be, meds or not.
Thanks again for of the encouragement!