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!

Posted in breast cancer, health, Yahweh's fingerprints

WHEN SUPERWOMAN LOSES HER CAPE

It’s been a little over three months since my treatments ended, and almost three months since I’ve been on Tamoxifen.  It’s been a roller coaster ride for sure.

I have a love/hate relationship with Tamoxifen.  I love that it has the potential to keep breast cancer from ever coming back, but I hate how I feel about 10 days a month.  Of course, it’s hormone related and it’s brutal.  For most of the month I have good days.  My energy is increasing and I feel better in general.  Then, HELL WEEK starts. 

PMS has gone from a two day annoyance to an all out war with my hormones.  During HELL WEEK I alternately want to tear phone books in half and smite people (my tolerance for stupid and the judgmental is non-existent) or I want to crawl into bed with a box of tissues and cry myself to sleep, or cry reading the news, or while watching football, or sob during Happy Feet commercials.

Tamoxifen intensifies anything I ever experienced related to my cycle, but it’s only been a few years that I’ve had anything remotely intense.  When I was in college, I never got PMS of any kind while my friends had cramps and crying and mild/or violent mood swings.  I was so oblivious to what other women endured that M (who shall remain nameless because she might not remember she did this) put a curse on my children that they be born breech so I’d at least be able to commiserate with some pain related to my female reproductive parts.

HELL WEEK got so bad last month I almost stopped functioning completely.  I was nearly hysterical one night because I couldn’t stop crying (for no reason).  I wrote an email to one of my closest friends stating:  Is it bad that I hate the way Tamoxifen makes me feel so much that I don’t want to take it anymore and I’d rather take my chances with cancer?

I was serious.

My oncologist, upon hearing this news, was not amused, especially when I added that if we couldn’t at least get HELL WEEK reduced to annoying but manageable days, then she would have to force feed me Tamoxifen once a day and write me a note to work at home those days and pay someone to sit with me to make sure I didn’t cry all day and bankrupt myself on QVC or the internet buying things that made me smile through my tears.

I guess I made my point, because I have another prescription for some medical equalizers that should help HELL WEEK go away.  I will have to wait a week or so to feel any different, the doctor said, but HELL WEEK should lessen and if the prescribed medical equalizer didn’t work, we’d keep trying until we found something that would work.

It’s been really wonderful to have a team of doctors (there are five of them now) who are working so hard so that I will not only survive, but thrive.

The biggest issue I’m having is how limited I now feel.  All of the doctors have told me that I can no longer burn the candle at both ends as I’m accustomed. If I get overwhelmed and stressed, I can’t push through, I have to STOP and relax.  I can no longer dig deep and pull all nighters like I used to, nor can I keep up the wicked pace I sometimes force upon myself so that I don’t miss a moment of any event, day or breath.  If I didn’t have to sleep, I wouldn’t.  There’s so much to see and do in life.

I told my team of doctors (I’ve had 5 doc appts this week) that I am not handling losing my Superwoman cape very well.  I am no longer “invincible.”  I am no longer the queen of multi-tasking, and sometimes I say some words and mean others.  I tire easily.  My joints and muscles hurt (thanks Tamoxifen) and my clumsy moments are multiplying.  My eyes are not as reliable as they used to be, and working around that limitation as a photographer is frustrating and frightening.

I have done some rather stupid things that if I was clear-minded I would never do.  I get confused.  I feel like I’m walking through life in slow motion or in a thick fog.  I don’t feel like I’m the best version of myself right now, and I have fought long and hard to break out of my prison of mediocrity.

People forget that the fight against cancer doesn’t end for a patient when they stop chemo or radiation.  Years lie ahead, years filled with other medications and an endless stream of doctor’s appointments.  Life is forever altered.  The old life can never be regained completely. 

Women have to learn to continue to be Superwomen without their capes.

I’m sure it can be done.  I see examples of it every day.  I think the ones that make the transition learn to let go of their old lives and fully embrace the new, even with all of its meds, new diet and challenges.

Yes, I’ve lost my cape. I think it’s at the bottom of a Tamoxifen bottle.  Regardless of where it is, the cape is out of my reach.  Instead of chasing what was, I will live with what is, and invest in the what can yet be.  My life was more than the cape anyway.

Posted in breast cancer, health

NORMAL IN THE EYE OF THE BEHOLDER

I took a giant leap forward in my journey to return to “normal” this week:  I put on a bra. Yes, for the first time in 2 1/2 months, I was able to expand my wardrobe past the five large, baggy shirts I’ve been confined to wear to conceal my braless status.  If you’re a man, you have no idea what this means to a woman. After all, we wear this confining contraption for men and fashion and a host of other reasons.

I have always had a love/hate relationship with the bra.  I love the lift a bra gives but I hate underwires. I love the clothes that a bra allows me to wear, but I love the freedom leaving the bra behind gives me. Wearing a bra on brand new skin when it’s over 100 degrees out isn’t necessarily the best plan, but I managed to get through it without needing any new skin. I did ache a little after work.  It wasn’t the best feeling in the world, but it was time to rejoin the world as a “properly” dressed woman.

I’ve started meeting with a nutritionist to deal with the weight issue. Surprisingly, I do not eat enough calories in the day, but even so, I find it nearly impossible to lose a significant amount of weight even when I make the effort. I have seen an endocrinologist and the medication I am on for my thyroid is keeping my levels fairly normal, so we are keeping on that track until I have a 3-month checkup in November. 

My energy level increases every day and I feel better each day in general as well. I started taking Tamoxifen a week ago and it has delivered the four side effects I really could do without – road blocks to energy level (fatigue, but so far not as much as the radiation delivered), upset stomach/ZERO appetite, headaches and hot flashes. Hot flashes in 100+ degree weather is not fun.  Having zero appetite when I’m supposed to be eating MORE makes it very difficult to make myself eat, though I’m trying to eat as the nutritionist instructs. Upset stomach and headaches do not help me get motivated to exercise, but I’m pushing as much as I can.  I’ve been told these symptoms should dissipate over the coming weeks. I certainly hope so!

I also need to be patient with myself. I’ve been on a rush to get back to normal, but after four work nights in a row of not getting home until after 8 pm (and then trying to eat right) I was exhausted. The rest of my life will have to unfold a little more slowly if I want it to unfold for the long haul. 

 

Posted in breast cancer, health

ROLL THE DICE, MOVE THREE SPACES

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I have been at the doctor’s office at least once a week for the last eight weeks. I met with the oncologist this week, a 3-hour appointment that left me exhausted, but hopeful. I answered questions, filled out forms, had a complete physical exam, and they drew blood. Marking where I am physically before I begin radiation treatment took longer than I thought, and I have a 2-hour appointment with the radiologist on Wednesday.  I am grateful, though, to get closer to action, rather than information gathering and assessment.

A week ago Friday, I got the news that the tissue they removed during my lumpectomy included a 2mm tissue sample of Stage 1 aggressive cancer. I spent the weekend very troubled, because this news, in my mind, made me skip a few spaces toward chemotherapy.  I believed that because I thought I would test positive for BRCA gene mutation, which would put me at high, high risk for recurrence and the doctors would want to do whatever was necessary to lower that risk.

Monday, however, the doctor called to give me the news that would move me back a few spaces away from chemo. I tested negative for the BRCA gene mutation. I was more in shock by that news than the news I was now advanced to Stage 1. That relief was much needed in the midst of the weight of uncertainty. I hadn’t even given a negative result a second thought.  I felt like I’d been given a free roll of the dice.  Move ahead six spaces past chemo.

The oncologist and I talked about another issue that needed addressed: my weight. My cancer is estrogen positive which means my fat cells are the enemy. I also have to navigate a new diet tailored to reduce the risk of breast cancer recurrence. All I have to say is, “no bacon.” I will be seeing a nutritionist in August after radiation so I can get started on that as soon as possible.  In the meantime, I have been looking into vegetarian dishes on my own.

So that’s where everything stands.  I will most likely start radiation in a couple of weeks.  I will take treatment every day, five days a week for six weeks. That will take me through to the end of July, and then I will see the oncologist again. To me, it all seems like a random roll of the dice, but I know God has it under control.

Posted in health, weather, weight loss

I AIN’T COMPLAININ’, I LIKE THE RAIN

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We haven’t had a significant rain several weeks. The evidence is not dry streets. The SPOD (Spring Pollen of Death) has coated my car in a greenish-yellow paste and has for quite some time now.  I’m giving the weatherman one last chance to predict a PWCW (Poor Woman’s Car Wash) tomorrow.  If he lets me down, I will have to seek out a place to rinse off my car, which is currently a rolling advertisement to SPOD.

I haven’t taken many photos lately or written much. I’m trying to give my body and brain time to find their balance as the doctor monkeys around with my thyroid and vitamin D levels without pressuring myself to flip the creative switch.  Apparently my vitamin D levels were so low, and have been for some time, that I have to take 50,000 units of vitamin D per week to try and catch up. Most people take 400 units a day. Couple that with questionable thyroid levels and I’m amazed that I wasn’t worse off hormonally than I was.

I do have to say, just over a month into this whole process, I do feel so much better than I did in January that it’s difficult to describe. The doctor did say that all of my levels will not be “normal” until sometime in late summer, which I can’t even imagine how much better I’ll feel then.  I can say it’s amazing what a better functioning thyroid and increasing vitamin D levels do for the human body.  Thank goodness I felt the freedom to tell my doctor to figure out what the hades was wrong with me and not put up with, “there’s nothing we can do,” like I did last time.

My energy levels still aren’t what I had hoped, but I am exercising again.  I am still not sleeping like I’d hoped, but I am sleeping more.  I have to remember that one month of meds doesn’t erase what was estimated as years of deficiency overnight. I still have hope that my energy levels will continue to rise, that my creativity levels will also continue to rise, and my general health will also continue to rise.

I also feel less…doomed, for lack of a better word. I feel like I am going to be all right now. My brain is no longer foggy or weighed down by sadness or hopelessness. I never imagined how much of my issue was physical on top of the mental demons I fight. The demons seem smaller now, because they are no longer magnified by deficiency.

That’s not to say I don’t feel sad sometimes or feel a little crazy, but those times are mostly in my rear-view mirror now. The rain can fall, but it doesn’t drown me. I am looking forward to what the next few months will bring and seeing the results of hard work and the ability to keep a disciplined thought.

Hopefully, the rain will come tomorrow and I will enjoy it…and my car will be free of SPOD.  Well, ok.  Free-er of SPOD.

Posted in about shae, breast cancer, health

BREAST CANCER AWARENESS MONTH

October is, besides being National Sarcasm Month, (like I need to tell you how well I celebrate that), is National Breast Cancer Awareness Month.  I don’t know of anyone who doesn’t know someone who has triumphed over or succumbed to breast cancer.  Breast cancer has mercilessly ravaged my family, taking lives, and derailing some for a time, and every year I anxiously await my mammogram results until I get the “all clear” sign for another twelve months.  The question is always in the back of my mind as I slowly open that envelope, “is it my turn this time?”

I have had one biopsy already – when I was in my mid 30’s.  I ran out of blanks in the “who in your family has had breast cancer,” section on the info sheet at the imaging center and handed it to the nurse and asked her where I should write the other names (and this was before my cousin had been diagnosed).  She had tears in her eyes.  It was also my deceased brother’s birthday, so I had a lot on my mind and my knees nearly buckled with the weight of all that emotion.

When I got the news back that the lump they found was a benign fibro adenoma (read about my mammogram and biopsy adventures) I was so relieved.  The doctors have been so careful ever since and I have been faithful to get that mammogram every year.  I found, though that experience, that I’d rather know than not know.  You can’t fight what you aren’t aware of.  In this case, ignorance is not bliss, it’s death.

The memories of my mother with no hair linger, of her wigs and how she used to lift them up to let cool air in against her skin.  My mother complained often about many things, but she never complained about that.  It just was what it was.  The second time around, she just shaved her head and let everyone see.  It was what it was.  It was part of the process, part of the uniform of, “I’m fighting for my life.”  She’s been gone for almost 8 years now, but when January rolls around each year, I remember, most painfully, what cancer has done to my family.

I have cousins and aunts who have lived quite long lives after fighting breast cancer.  I think it’s that Scot-Irish steely resolve that, coupled with the fact the women in my family are just naturally strong, brings out the “oh, yeah, bring it,” attitude that balances with, “it is what it is.”  If cancer wasn’t such a horrid disease, I’d almost feel sorry for it when it chooses a woman in my family to fight with.  I’m hoping by the time we younger ones come to that time of life (who am I kidding, I am in that time of life), when cancer tries to rear its ugly head, that it looks up and says, “oh, it’s one of those Mills women.  Forget it! Run for your life!”

I encourage you to visit The Susan G. Komen foundation and make a donation, or purchase products that show your support in the fight against breast cancer. As much as I dislike pink, this is the month I will wear it and make that statement that I remember, I honor, and I fight.

Posted in health, weight loss, Yahweh's fingerprints

NOT JUST ANOTHER PRETTY FACE

The other day I got in a picture-posting war with a friend of mine from college on Facebook. We started posting pictures from our college days. Of course, we did not post certain pictures… you know, we were kind to each other. I laughed as I went through each picture. Wow, did I have wardrobe and hair issues!

If some of these pictures had surfaced a few years ago, I would have been mortified. I used to be consumed with what people thought of me and was convinced people’s acceptance of me greatly depended on how perfect my hair was, or how stylish my clothes were or how I looked in them. One day a friend pointed out that perhaps people didn’t think as much about how I looked or what I did as I thought they did. She was right.

Somewhere down the road, I became comfortable in my own skin. My face, my hair, my weight… how I look in pictures… it all is what it is. Most of me is fluffy. I could stand to lose a few pounds, simply for health reasons. Most of us could. I don’t obsess over my weight though. Not anymore. My two chins have grown comfortable with each other. If one were to disappear, the other would leave to go find it and bring it back. Then I’d look really odd, but I still wouldn’t care.

Yes, there are days when I still have bad hair days, my face still breaks out, and some days my jeans are too tight. The biggest difference is how I view myself as a whole… or rather, how I view myself as whole.

I’m not even close to the end of the road, but I am thankful to have finally hit this milestone. I’m sure there will be a day when I will burst into tears when I don’t think I look just right, but I hope I can remember that life isn’t about being another pretty face…and that no matter what anyone says or thinks, it is a pretty face.

Posted in dental adventures, health

OPTIONS, BUT NONE OF THEM GREAT

First, the good news: I found a free standing Arby’s in front of the new Target on Westheimer and I had to explain to the guy at Home Depot that I knew the difference between spackle and joint compound. I like going to home improvement stores and showing off.

Now onto the other news:

I got little sleep last night as the pain pills did very little to knock back the pain. Fortunately, I think the antibiotics are starting to work, so there’s hope that the pain will subside soon.

I loved the endodontist I saw this morning. He was very honest and talked me through what the problem really is. He could have just done the procedure, collected his money, and I’d be home taking big pills and talking to inanimate objects, but instead he gave me some options to think over instead.

I could clearly see on the x-rays where the infection was in the bone and why it’s so painful and how my roots curve under (digital x rays on the computer and they were so clear and it was so cool). I could see where the previous dentist had not penetrated the root fully and where the crown he made was too short and was letting stuff in to get infected.

My options are:

1) a complete reworking of the root canal and crown, very expensive out of pocket and not guaranteed to work. He said 50/50 chance and even then he would do it if I decided to, but he really, truthfully wouldn’t recommend it.

2) a very, very expensive implant which he said still might not be a great idea.

3) pull the tooth.

I’m leaning toward #3, but I have a week to go in taking the antibiotics, so I have a few days to think it over. I stayed home rather than going into work to take more pills and rest and try to decide what I’ll do.