the unbearable lightness of being bald

I wrote this post on July 15, 2015:

Life is full of decisions. Every day we have to decide things. What to wear, what to eat, when to get up, when to go to bed, what to read, what to watch on television, what to read and comment on, browse etc on the internet. When I take a day off from life, I usually try to limit my decisions to no brainers, or things that are easy to choose and use minimal brain cell energy. Do you have days like that?

Most of the time my brain is whirring away with the next idea, the next thing I want to do, the next thing to learn or see or listen to.

Until May. I don't remember the specific day, but I remember what I was doing. I was having lunch with Wretch when I got the call that changed my life as I had known it. The call that made the suspicion a reality. From that point on, my thinking changed. I had trouble concentrating and finding words. I still do at times. That is probably because I have turned off part of my brain lately.

I want to be left alone. There are many times I don't want to talk to anyone, or listen to what they have to say. I have absolutely no ideas running around inside my head part of the time. Just this......void. A sort of nothing. There are times I go numb. I can't feel any emotion, I can't connect to any thoughts. I just...am.

This doesn't last all the time, thank goodness. Because if it did I would begin to resemble a vegetable. Broccoli most likely. Not for any particular reason, but because I like broccoli. It can lay down, or stand up, and even though it has a big head, it doesn't do much thinking. It describes how I feel a lot of the time lately. Standing, big head, and no thoughts going on inside that big head.

It has been a long 2 months since that fateful phone call. Sometimes it feels like a dream that I will wake up from.

I'm still waiting to wake up.

December 30, 2015:

Today my outlook and thoughts are a bit different. This year has definitely been a challenge on a personal level. I hit some low points I never thought I would have to face in my life. I'm not one to natter on about stuff, but I would like to share some things that happened to me, with the hope that if anyone else faces breast cancer, they will have some knowledge of things happening to them.

In May, I was diagnosed with breast cancer. Not all breast cancers are equal, and because of a yearly mammogram, I was lucky. My cancer was very early stage, and very small. And very treatable. I felt at that point that I had won the cancer lottery.

At the end of May I had surgery, and then I had to have surgery again in June. It seems pretty common that when a woman has a lumpectomy, there is often a positive margin that requires a second surgery, or resection. I had some pain, but the main thing was that I was limited in what I could do, and that was frustrating for me.

In July, I saw my oncologists. In my brain, there would be one oncologist, but that isn't the way things work. One doctor handled the medication I would be taking, and the other the radiation I would be receiving. This is standard treatment for very early stage breast cancer. The staff at the cancer center were wonderful, and I felt an atmosphere of support, and a camaraderie among the patients, because we were all in the same boat, rowing with identical oars.

At the end of August, two things happened that would make September and October the most difficult and challenging months of my life. I started taking Femara, a medication that blocks your body from producing any estrogen, a pretty vital hormone for women. My cancer was estrogen positive, which increased the risk of it returning. I was taking estrogen at the time, and was told I needed to stop taking it. So the day I swallowed the first Femara, I stopped the Estratest. Cold turkey, no tapering, just did it. I also started taking radiation treatments 5 days a week for 6 weeks on August 24th.

By the third week in September I was feeling hopeless. No energy, fatigue so extreme that many days I had to leave work early so that I would be able to walk up the steps and in the front door of my home. I've never felt anything so overwhelming in my life. I finally told the nurses at the center how I was feeling, and that if the next 5 years of taking this medication were going to make me feel like this, I didn't want to go on.

I'll never forget what they said to me. "Oh you are depressed! You need to go to see your primary care doctor, and ask for something for anxiety, depression, and something to help you sleep." I was dumbfounded. First, because I hadn't been able to figure out what was going on with me (I am a nurse after all and have cared for people with depression for many years). At the same time I was SO glad they had put a name to my misery. I was so depressed, I couldn't even cry, or laugh, or feel any emotion. Take my word for it, that is a pretty miserable place to be. I hated the thought of more medications, but at that point was willing to try anything.

The second thing that struck my mind when the nurses chirped out that information to me, was that I was not alone.  Even deep in this dark place, I felt less alone, less isolated. The next week I saw my family doctor, and we opted for Clonidine for sleep. Even though it is for blood pressure, taken at night it can help with sleep. He also prescribed a low dose of Celexa, an antidepressant that also helps with anxiety. Another recommendation was Black Cohosh, a natural supplement that helps with hot flashes, because at that point I was also going through menopause for the second time in my life.

Three days later, Stevie Wonder said "you're feeling better aren't you?"

And I was. I could already feel the effects of the medications. When the medication is right, it makes a big difference in the quality of your life. So depression was zapped, but I was having other side effects from the Femara. Bone and joint pain from hell. Some days it was so bad I could barely make it through the day. I lived on ibuprofen just so I could function. I even took it at night, because just turning over in my sleep could cause me to wake up from the pain. I have a high pain tolerance, and this medication found that spot and tap danced on it with spike heels.

At the same time, my right breast, which I thought was going to escape burns from radiation, decided to let me know that my luck had run out. My boob began to resemble a piece of fried bacon. And let me tell you, the smell of radiated flesh dying and sloughing off in sheets is not something you want to have going on with a part of your body that is located right under your nose. And of course, with burns there is pain too. I guess you could say that the bone pain distracted me from the burn pain a bit. Thank god for ibuprofen.

image from Wikia.com

Then my vanity took a hit. My hair had begun to fall out. Just a bit at first. By October it was coming out in handfuls. This hurt my pride, because I had spent almost a year letting my hair grow out, something I hadn't done since I was 10. There was my effort, going down the drain. I was a bit miffed because my family doctor and oncologist both said they thought it was temporary. The Onc thought it was male pattern baldness from loss of estrogen (GREAT), but I realized two things. One, there was NO male pattern baldness in my family (even my sick 84 yr old mother had a headful of hair), and two, male pattern baldness affects the top of your head, and my hair was coming out all over.

The good thing about the hair loss...it took my mind off the pain, and gave me a chance to try out some really expensive shampoos and hair treatments that I would never have had a chance to try. I decided I was going to keep this hair I had grown until I looked like Gollum in Lord of the Rings. I also had a follow up appointment in December with the oncologist, who decided to stop the Femara, and start another medication. As of today, the bone pain has stopped.

And...my eyelashes and eyebrows are starting to fall out. I have to laugh though. I made it through the darkest time of my life, and came out smiling.

...every day is a new adventure...  ~cat
i am @jonesbabie on twitter

on reality and the randomness of thinking

Life has been crazy busy lately. I have a (fairly) new position at work that fires my enthusiasm in a new way. Daily radiation for breast cancer treatment has become part of my life like my first cup of hot tea every morning. Life isn't static, and in a few days mine will take a turn in the road. Everything that has happened has made me a bit more introspective, and when I haven't been working, which takes most of my energy these days, I am resting (fatigue is a side effect of radiation I discovered). With all this resting comes a lot of time to think, and I have lacked the will and/or the energy to write any posts sharing my thoughts.

One thing that has always remained constant in my life is art. I have always turned to it when I am stressed, life is difficult, or when I have a lot of thoughts and emotions running around inside me. It is my therapy, my solace, my friend. A safe place to go to when I just don't want to have human contact.

Recently during one of those times, I turned to digital art. My daughter Jen had recommended an app to me a long time ago, I had tinkered with it once or twice, but never devoted any time to it. One day, when I was feeling really down, I picked up my iPad to read and instead opened the drawing app. I started doodling, and then drawing, and before I knew it I was totally immersed in it. Paper by 53 is easy to use and doesn't require a large learning curve, right up my alley at this time of my life. I started doing some drawing in the mornings, and in the evenings if I wasn't too tired. It helped to level and recenter me, just as art has always done.

One aspect of Paper is a community you can post your artwork to, that can be seen by other artists, or "remixed" by them and reposted. Mix is a way to share ideas, doesn't require a lot of communication, and lets you see some inspiring art and ideas. I also noticed that there are a large number of children on Mix, and I see them commenting on works of art, wishing they had better art skills, and asking for tips which most artists are glad to give. It is a unique community.

As I watched these children (from grade school, middle school, and high school in age), it bothered me to see them beat themselves up about their skills, and I thought about what art is for me. I have seen many skilled artists in the social media sites I participate in, many of them lucky enough to be working artists, some who do it on the side just because they love it, like I do. I remember as a child wishing I could draw like a girl in my class, or a boy. I can close my eyes and see their art and their faces, forever children in my mind. I don't know if they followed this into something professional, or if they even continued to pursue their talent. I do remember my angst, even though I realize now I had fairly good skills for my age. Always wanting to be like someone else, it created negative feelings and self doubt in me at times.

I look back now, and realize that at some point in my life, I stopped wanting to be like other artists. I use my art now to bring me joy, and as a way to express my thoughts and feelings. (My photography is much the same, an extension of my inner thoughts and feelings..) With that release from envy, or longing if you will to be like someone else, came freedom and pure joy at what I do now. I wish I could convey this to those children, and tell them what they feel is normal, not to give up, to keep practicing their art, and learning. Since space is limited I found the best way to do that was a quote from one of my favorite artists, one who spent most of her life living in her artist-husband's shadow, even though she was a gifted artist in her own right.

When I was reading the posts today for Friday Reflections, I saw a prompt that induced me to finally...FINALLY... open my computer to write again.

The prompt is:
Reflect on a quote that has touched you this week, or that has made you laugh.

The quote that touched me, that resonated with me this week is by Frida Kahlo:
"I never paint dreams or nightmares. I paint my own reality."

Be true to yourself. Paint your own reality, with whatever you choose to express yourself.

...never stop reaching...life is good... ~cat
i am @jonesbabie on twitter

sisters don't suck

I haven't been much in a writing mood lately.  I started a new medication to prevent a recurrence of the breast cancer they just scooped out of Goliath.  My hands hurt like a toothache that won't go away, I have hot flashes that make me glisten with sweat like a greased pig, along with white-eyed insomnia, and a total lack of energy that makes every step an effort. I feel almost guilty that I am bitching about this at all, and I should sound grateful that the cancer was caught so early that I have a marvelously high chance of beating it. And I am grateful, make no mistake.  Every minute that I am miserable I am grateful for my luck. Grateful for the machine that found the lump long before it could be felt by hand.  Grateful for the surgeon who cut it out. Grateful for the radiation oncologist who will soon be barbecuing my boob to kill any cancerous cells lingering around. Grateful for the oncologist who prescribed this pill that has caused side effects that have placed me in temporary (hopefully) hell.  

And today I am grateful for my sisters.  They are so much a part of who I am that sometimes I feel we breathe for each other. They are the best part of my life, during the worst part of my life. They taught me about trust, laughter, anger, happiness, and what being a sister is all about. They also taught me that love is unconditional. I've learned acceptance, and how to listen to their counsel. Growing up, I was the one they looked to for advice, being the eldest sister.  Those tables have been reversed in the past several months as I struggled to deal with this cancer. They are MY rock now, the ones who make me laugh when my mood is dark, the ones who I know are always thinking about me.  They are still part of me, have always been part of me, and will be until the day I die.

vix and dooj

So today, in response to the Friday Reflections prompt "Tell us about your brother or sister", I share my love of the two remarkable women in my life that I am privileged to call sisters.  This is for you, Vicky and Debbie.

I love you.  Thank you for being my sisters, and for being who you are.

(More about Dooj and Vix here and here.)

...life is good. ~cat
i am @jonesbabie on twitter

the starry night

One night last week, I found myself lying on a lounge chair under the stars, with my youngest daughter Deborah lying beside me on another lounger.

It had been a difficult week for both of us. I had been to the radiation oncologist and was one step closer to getting my boob barbecued.

Deborah's week had been equally difficult.  Life has been sending her curves for a while now, and every time she gets a foothold and feels as though she is beginning to move forward, something knocks her down.  This time the something was enough to make her feel hopeless for a bit, before she righted herself and decided to plunge forward.

So there we were, watching the Perseid meteor shower on the peak night in August when they were shooting across the sky leaving long trails, talking about a lot of different things.  It brought to mind a favorite song about one of my favorite artists and that song ran through my mind while we lay there star gazing.

The talking included a couple glasses of wine, so that may explain why our conversation ambled along about these subjects:

Nocturnal cow mooing.  We thought it was a romantic time of the month for cows, and the meteors were putting them in the mood.  One cow in particular bawled her way across the pasture from where we sat, mooing loudly from one end to the other.  Occasionally another couple of cows would chime in.

Tiger chuffing.  Not to be mistaken with roaring.  Deb said it was a sign of her lack of a social life, that the last thing she searched for on her iPhone was tiger chuffing.  It was replaced by cow mooing, which is when we discovered it wasn't cow sex going on, but one cow trying to find the herd.  Which totally burst our romantic notion about cows.  I was irritated at this point by the cow screaming across the road, so I.....

Stirred the cows up with my iPhone flashlight.  I know, totally mean of me, and I paid for it by being flogged by a million bugs rushing at the light and up my nose, in my eyes and ears, and...well you get the idea.  Deb also was eaten alive while Googling cow mooing.

Our California road trip.  Possibly the best road trip of our lives.  While we reminisced about the trip, we also talked about our own insignificance in the scheme of the universe, watching the sky light up with orange meteors shooting past in the sky overhead.  Then things deteriorated again when we decided to move our lounge chairs to face the house because it seemed like the meteors were coming from there.  That was when....

I peed my pants trying to get up off the lounge chair to move it.  I hadn't been to yoga in a couple months due to recouping from surgeries, so my abdominal muscles were jello, and so were my legs, which led to the above.  After we got settled down, we realized that the meteors were actually more visible in the direction we had just turned from, and somehow I made it up off the lounge, then Deb said something, I laughed, and peed my pants again. Just a little.   At that point, we started to laugh and talked about....

Estrogen levels and how they affect homicidal behavior.  I had just been taken off all estrogen, given a tablet to block my body absorbing any estrogen it might try to produce on its own, and told that the pill would probably give me hot flashes.  By a doctor who was smiling so kindly at me when he said it that I thought seriously about slapping him.  Just for a second.  Which means this ain't gonna be good, if I felt like that while I had estrogen still floating around.  About this time a leaf blew off the tree and hit Deb's shoulder, and she screamed loudly.  Which made a cow start mooing again and made us....

Laugh at shadows, more bugs, and leaves.  About that time we were sipping the last of our wine, and didn't notice Steve slip out and say something in his booming deep voice.  I jumped and screamed and so did Deb.  I thought a cow had gotten loose, circled around behind us and was about to charge us.  I invited Steve to join us, but he said no, he was going back to bed, which caused me to wonder out loud why the *#&$ he had bothered coming out at all.  Except I knew why.

He wanted to make me scream and pee my pants.

Because he is evil that way.

Thanks Deb, my Wretched Daughter, for being there to watch stars with me.  Let's do it again kiddo. Same time, next year.

(This post is in response to two prompts on Friday Reflections, how I deal with anxiety, and reflecting on my favorite song.  Somehow, this week, they were both tied together.) 

...life is good. ~cat
i am @jonesbabie on twitter

just face it

Two prompts for the Friday Reflection for June 10, 2015 caught my eye. Prompt #1 was a quote by Lauren Bacall, who said "I think your whole life shows in your face and you should be proud of that." At my age and with my experience in life, writing about my face would be easy peasy. A bit too easy. So I decided to add another prompt into the mix and combine them for a twist on the Friday prompt.

Prompt #2 was look through my photographs and choose one to write about. This is the photo I chose:

That was me about 4 weeks ago, on the morning of my first surgery for breast cancer.  I say first, because I found out that a second surgery was needed a couple weeks after the first one, and that was not an easy prospect to face. In this photo, I was positive, and just ready to move forward. Who doesn't want to get past something like breast cancer and move forward?  Being positive was easier with that first surgery. The second surgery was more difficult, because negative thoughts began to creep in and take over my brain.

It was hard to overcome those negative thoughts. I am not a negative person by nature, and won't whine and bitch about what was going through my mind. I won't give a lot of advice about the experience either. There have been tons of articles written about breast cancer and survival, etc. Sooner or later I will write a more personal post about my experience, so that maybe someone else who is diagnosed with breast cancer and starts combing the internet for information, will come across my little post and have a few questions answered.  But that time isn't now. I am not ready to dig that deep into my thoughts.

So I will focus on the photo of me.  Sans makeup, it shows me smiling, which is something I do most of the time. I have had a mostly good life, a magical life, with just a few life bumps along the way. Until this year, when I seem to be traveling a mostly bumpy road. Since January I have had to deal with things that are new and difficult for me to comprehend and work through. I have gotten past some, and some are still happening. I've decided that the best thing to do to get through a year like this year is to just take one day, one step at a time. To look forward too far is to sabotage where I am right now. And to look backward with regret is a waste of energy, because nothing will change, and again, it sabotages where my life is in the present. It prevents me from working through what I am dealing with at this moment in time.

So I will drag out my copy of A New Earth by Eckhart Tolle one more time, and thumb through it, and regain some insight into my mood and way of thinking, which lately has been self defeating. I will do this because I am that positive person my dad had a big influence on. I have that strength in me, waiting to be tapped into. I will do it because I am a get it done type of person, and not possessed of a victim mentality. 

I will continue to depend on my family, reconnect with old friends, make new friends, stay connected with my sisters (who were the first best friends I ever had), and find joy through my art and photography. I will tap into the strength inside me to overcome and deal with anything and everything, and it will show in my face.

My face, my eyes. An open window to my soul. 

...life isn't always good, but it is always real... cat
i am @jonesbabie on twitter

tunnel vision

Been looking at this tunnel for months now.  This year hasn't been the best, but I really can't gripe much, because it could be worse.  Yes, things can get worse.  I've had those years too.  It's been a while since I felt like pieces of the sky were falling, and hitting my head, but this year has taught me that it is time to bring out the safety helmet before the next piece of sky whacks me.

I don't mean to sound negative, and I am sure that there are plenty of oh woe is me blogs out there, and I am really not that type of person.  Mostly I've been numb and just not dwelling on this cancer in my breast.  I am good at avoiding stuff. When things get tough, I have a knack for just not thinking about a problem if there is nothing I can do about it. I have to say, this problem has given me pause though. Time to think about where my life is, where I want it to go, and things I haven't done that I want to do.  We all think about things that way sometimes, right?  I mean, I know I can't be the only person who has felt these things.

I feel like I have kind of skipped all those stages of grief that Elisabeth Kubler-Ross wrote about, and just went straight to numb. As numb as the armpit and shoulder where the lymph node was removed.  I'm glad for small things, like finding out this cancer has a 94%ish cure rate, and that the lymph node was negative.  It almost makes me feel ashamed for feeling this numbness.  But it is there, and I can't make it go away, so I am focusing now on the light at the end of the tunnel.  And allowing myself to be numb for the moment.  Thinking as I watch the clock tick away and the hours go by until this next surgery later this morning to remove the cancer cells that were missed, and that the tissue biopsy revealed.

So I look at Goliath and wonder what it will be like to have a breast with a crater in it, dread being put to sleep and the loss of control over my own body, dread the discomfort and pain afterward because I am so effing ready to be well again, and not this recovering surgery patient.  I want my effing life back, things back to normal.  I have SHIT TO DO.

So, hurry up sunrise, and let's get this show on the road.  I have a life to live.

the light at the end of the tunnel

 My parting shot is a favorite Pink song, that exactly fits my mood right now...(alert, explicit language)...

Is there anything in life BETTER than rock and roll????  

 ...life is good, dammit, so raise your glass!!... ~cath
i am @jonesbabie on twitter

life, washed down with cherry garcia

These thoughts go hand in hand with #FridayReflection prompt:  Reflect on the following quote: "Don’t compromise yourself. You are all you’ve got." - Janis Joplin

When life throws me a curve, I head for my standby coping skill...music.  Lately it's been music from my past, and last night it was the Grateful Dead.  I decided I needed some ice cream to add to my cope plan (that is my weapon for extreme emotional punches to the gut).  And my go to flavor is Ben & Jerry's Cherry Garcia. I grabbed some, and then spotted my newest coping obsession beckoning enticingly from a shelf on my way out.  I swear I didn't intend to do it, but suddenly they landed in the cart.

So last night was a time for ruminating, minimal communication with my family to keep them in my loop, and just vegging with music and a sugar high.  Because let's face it, the Grateful Dead still effing rocks, and Cherry Garcia slides soothingly across your tongue.

Along with a big ahhhhh of a bite of Banana Hostess Twinkies, a new flavor in a cake that is as big a part of my past as the Beatles, Disneyland, Santa Monica Beach and on and on.


And I realized as I slurped, chewed and listened, that what is happening is a bump in the road, and not a mountain. So it is time to deal, and move on, not to whine or worry.  Time to focus on the present, and let the rest take care of itself.

Sometimes, when you are grateful to be alive, all you need is the Grateful Dead in your ears, and some Cherry Garcia to wash it down.

 

...life is good with a little cherry garcia on it...  ~cat
i am @jonesbabie on twitter
 

sex, drugs, and rock & roll

#Friday Reflection prompt: Reflect on how it's important to make the most out of life.

Several weeks ago Wretch noticed the Steve Miller Band was going to be performing  in concert  in Tuscaloosa, Alabama in June. I told her to book three tickets and we would drag Stevie Wonder along to it. We'd missed the Magic City Art Connection and Corks and Chefs on April 26 because SW decided to break his pacemaker that weekend. We gave away three tickets so that Wretch and I could spend the weekend watching SW lie in a hospital bed in ICU waiting for a new ticker on Monday.

At the end of May, after a couple months of testing and retesting with mammograms, ultrasound and needle biopsy, I got the verdict. Breast cancer, caught early, and was told the recommendation. Surgery (lumpectomy), radiation, and oral medication for a few years. Not a problem. I was ready.

Then it hit me.

The concert I had waited patiently for was in a couple weeks.

Oh hell no, I thought to myself. I am not missing this concert, or dodging elbows with a boob that is in a sling. I talked to the surgeon, and although my oldest daughter wasn't keen on it (neither was middle sister when she found out later on), Wretch understood where my brain and heart were. With the music. The surgeon assured us I that I would not drop dead if I put my surgery off for 3 weeks.

So I did.

Sunday my ass was sitting in a pool of sweat in a plastic stadium seat heated to oven temps by the 90F setting sun at the Tuscaloosa Amphitheater. I sipped a glass of red wine in a plastic cup, groped SW a bit, and enjoyed some of the best music from the 70's played by a couple of great bands, now old farts like me. (Steve Miller is 71.)

And damn, they can still play.

Some things just get better with age.

...rockin the good life... ~cath
i am @jonesbabie on twitter

don't bury me yet!

Today I got the verdict. After almost 2 months, a mammogram, a repeat mammogram, an ultrasound, and a needle biopsy. 

I have cancer.

There. I can say it. Because several weeks ago I had a meltdown thinking all the what ifs. So I am past all that shit, and to the point where I am just ok, tell me what the percentages are, what my options are, and let's get this show on the road. 

My youngest daughter and I were sharing a Subway sandwich when the phone call came. She had just had a job interview, and we went out to grab a bite. And of course, after waiting for days, the call managed to come at a not so convenient time. But really, when you are getting news like that, is there ever a convenient time?

So, after about one split second, I thanked the surgeon for calling me, and made an appointment to see her in two days to talk about my options. Being a nurse, and having discussed possible options while I was having the needle biopsy, I kind of already know where I will probably go with this. 

The bad news was that it is breast cancer. But between you and me? I knew when I saw it on the ultrasound that it most likely would be. So today was kind of anticlimactic. Meh. 

The good news? That it is very small, 7-8mm. Coming from the boomer generation, I had to use my converter app to figure out just how little it was. Eight millimeters is equal to 0.3149606299 inches. (Is that even a real number?) If you ignore all but the first two digits, that is less than a half inch. Little bit more than a quarter of an inch. Tiny. With, I am told, a 90-95% cure rate. That is good news.

I told the family, they were kind of subdued. A little bit of texting, a couple phone calls and silence. My family IS NEVER SILENT. So I can feel the gears in their brains working, from here to the west coast. I told Wretch before she left me at my office to tell Steve not to bury me yet.

It is going to take a lot more than a little lump the size of my smallest finger nail to stop me. 

Although I am thinking, maybe I could ask the surgeon to slip with the scalpel and do a tummy tuck while she is resculpting my right breast to match my left.

So, don't bury me yet.

Oh, and ladies?  GET YOUR MAMMOGRAM. This cancer was so deep and tiny it couldn't be felt, not by me or the surgeon. The mammogram we all love to bitch about having has most likely saved my life.

SO GET YOUR MAMMOGRAM. DO IT. EVERY YEAR.


...life really is good. ~cath 
find me @jonesbabie on Twitter