Happy Holidays

what I learned today

That my husband can do an excellent job creating Christmas magic at 3am Christmas Eve all by himself.
That my children are happy with so much less than what  I sometimes imagine.
That my best can change from day to day, and that is not only normal- it is okay.
That it is okay to allow others to help you.
That letting go of perfectionism can sometimes allow for laughter and joy.
and that when you need to rest and take care of yourself, those that love you will understand... even if they are just three years old.

Being flexible

As a clinician, one of the things that I believe is that flexibility is a basic necessity for long term mental and physical health.  If you are able to adapt, you can survive.  I teach coping strategies to help to that end.   I often give the example to my students about a strong tree that doesn't move with the wind and breaks - as opposed to something more supple that goes with the wind and rides out the storm.  I tend to be a big strong tree - that sometimes tries to impersonate a willow.

But how do you become flexible?  Is it innate?  Do your parents teach you flexibility by showing you how to handle small and large catastrophes with grace? I have read that in general women tend to be more flexible than men.  I look at my children, and notice that my daughter was born a big strong stubborn tree.  A gorgeous tree.  But one that has a very hard time bending.  My son on the other hand, seems to take things in stride.  I don't feel like I did much different parenting - although I am sure I did.  Your child's innate temperament impacts how you parent each child.  My mother says that as a child I was difficult- high strung, never slept, emotionally sensitive, physically sensitive, and stubborn.  It is interesting the way as mothers we sometimes get to mother tiny versions of ourselves.  I have a whole new respect for my own mother.

But what does this have to do with Cancer?  Well, on December 11th I was told that chemotherapy would abruptly end due to the increasing neuropathy in my feet and hands and some possible foot syndrome.  I was extremely frightened about this notion.  I wanted to finish all six rounds of TCH (Taxotere, Carboplatin, and Herceptin).  Doctors feared that the chemo could cause extensive damage.
I had to shift my understanding of what was happening.  Scary.  I needed something to change my vision of what was happening.  I needed a visualization that would center around my healing.  I wrote the following story - when you read it, imagine a kind of WWII narrator from one of those short news reels that were often shown in theaters prior to the featured presentation...

The  cancer cells had no idea what was happening.  Why would they?  They had been allowed to grow undetected for years in a comfortable section of my left breast.  So comfortable they were, that they didn't venture beyond one lymph node in my left armpit.  
My doctors were brilliant and extremely versed in breast cancer warfare.  After sizing up the enemy, they quickly surmised a course of action to destroy it.  Armed with knowledge, experience, and research, they began their attack.  A strategy that would begin with chemotherapy.  Experienced fighters - Taxotere and Carboplatin would join forces with a newer player, Herceptin to begin the battle.  
With the first infusion, the cancer cells were taken completely off guard.  The medicines found their target immediately and went to work annihilating the enemy.  Cancer couldn't fight back.  By the third round only scar tissue remained.The fourth round killed any remaining cells that might have been hiding from view during the first three battles.
My body was another important force is these battles.  It worked tirelessly with the medicines to do what was needed to win this first battle - and win we did.  The war is not over yet.  The defense forces suffered some injuries, and so for now, my body will rest, train,  and gain strength preparing for the next battle.  Thank you chemo for a job well done.

I know, it is kind of silly.  But it helped me to reframe what had happened.  I didn't want to feel like I had failed.  I wish I had the time and energy to do a comic strip- maybe something I can work on when I am better.  After I wrote the story, I really did try to work on the healing portion.  I began changing my diet again, riding on the exercise bike, maintaining better sleep patterns.  I started to be happy that I no longer had to sit in the big girl chair.  My hair began growing.  And now I was on to my next challenge- figuring out how to cope with surgery.

But, this very long blog post is about flexibility.  My oncologist called Wednesday and asked about the neuropathy- which has improved greatly on the new medication.  He feels it is important to continue chemotherapy.  The one thing that helps me to be flexible, is that I trust my team.  But it is still hard.  I spent a lot of time crying.  I hate chemotherapy.  It hurts - physically, emotionally, spiritually.   But I also know that thus far, it has been extremely successful in obliterating my tumor.  So, I have been working on changing my attitude once again.  Which has not been easy.  I went in on Friday.  My pattern tends to be that I feel fine the first three days, and then it hits me hard - and remains difficult for the rest of the week.  Which means that it will hit on Christmas.  I will do my best to take care of myself, take my medications, and stave off the misery of chemo during the holidays- but I feel crestfallen.  As a mom, I have been preparing for Christmas.  I love Christmas.  I have a basket full of projects needing to be done, gingerbread houses not yet baked, pictures and snowflakes I haven't hung... and now, I don't know what will happen.  Flexibility sucks.  But breaking sucks more.
   

Of all the nerves

This has been a hard week- and it is only Tuesday.  Preceding all chemotherapy appointments, you must do blood work and meet with your oncologist.  These precautions are necessary to insure that it safe to continue chemotherapy and also to help with any side effects that you are experiencing.  My biggest side effect at this point is neuropathy.

Peripheral neuropathy is damage to the nerves of the peripheral nervous system.  At first I noticed some burning sensations in my finger tips - interspersed with the feeling that my fingers and toes had fallen asleep.  Currently, three toes on my left foot and two toes on my right foot are completely numb and tingling - all of the time.  My fingertips also have periods of numbness, but it is intermittent.  The bottom of my feet are also sore, making walking difficult.  I can not go barefoot because the sensitivity is unbearable.  My legs are extremely sore which also make walking challenging.  I am generally very flexible, and have no problem laying a flat palm on the floor without bending my legs.  At this point, I can barely bend over with fingertips dangling at my shins.  The leg pain is also constant and it radiates through out my thighs and calves.  In addition my legs, ankles, and fingers are swollen.  And to top if all off, my right eyelid is twitching like mad.  Sounds like fun, right?

So, of course I mention these symptoms to the nurse practitioner, who I have to say is awesome, because my oncologist is away on vacation this week.  She tells me that it is concerning and proceeds to do some tests that involve pricking me in the foot with a sharp object.  I could feel the pressure of the object, but not that it was sharp.  This coupled with the fact that the pain is now constant in my feet and legs, had her questioning whether or not we should proceed with chemotherapy.  She spoke with the other oncologist on duty who agreed.  No more chemo.  If  I continued, the neuropathy would only get worse.  Chances are good that I would end up in a wheelchair.  And these side effects can often take a year to dissipate after chemotherapy.  In my heart, I know this is the right thing to do.  I can't imagine the symptoms I already have lasting a year- and I super can't imagine them getting worse!  It is already challenging to do the things I need to do in my life as it is.  But, I have to say my heart was broken.

I wanted to soldier through- fight every battle to defeat this thing that has invaded my body.  I worry that with each thing that I can not do, the odds become less in my favor.  And although I am trying very hard to put things in a more healthy perspective, I feel a bit betrayed by my body.   I also didn't like the fact that I had no idea my last chemotherapy session was my last one.  It came and went with little fanfare.  Had I known, I would have celebrated, given roses to the nurses, taken photographs and videos documenting my heroism.  This ending of chemotherapy that I am currently faced with feels so anti-climactic.  I feel defeated.

So, I am trying to find the silver lining and reframe this setback as something different.  Trusting that my body held on for as long as it needed until every cancer cell was destroyed.  Trusting my body as it twitched and tingled, burned and ached to warn me that it was time to stop. Taking pleasure in this gift of the month of December, where I can celebrate the holidays with my children free of nausea and exhaustion.  And getting myself ready for the next step on this journey.

head above water

I sometimes find it hard to write about my experience.  I get worried that I will bore you with all of the gruesome details of how the chemotherapy drugs impact my physical being- and at the same time, it is hard to focus on much else.  Each dose of taxotere and carboplatin on their own are manageable- it is how they build upon each other that becomes problematic.  What began as a slight burning in my fingers once at Trader Joes has now become long periods of numbness where I find even typing difficult.  What was once a need to wear slippers because the bottoms of my feet were sensitive is now cramping through out my feet that makes walking excruciating.  The dryness in my eyes is now eye twitches and spasms that happen through out the day without reprieve (even when I am trying to sleep).  Bone and muscle aches add to the overwhelming feelings of exhaustion.  And the nausea that used to leave me four or five days after treatment now lingers well into the second week past chemotherapy.  For some unlucky souls, these changes are permanent.  For most of us, we will find a new normal after chemotherapy.  Our bodies changed without a chance of going back to how we once were.  But no one says chemotherapy is a cake walk.

The hardest part is keeping hope afloat.  Not allowing dark thoughts to overcome you.  Which can be challenging, especially when you have a tendency to be kind of melodramatic anyway.  I do allow a few crying jags every now and again, but I know that it is a place I can only visit.  I can't live there.

Tonight, after a bout of nausea, I went to my room with the intention of curling up into a ball, crying, and going to sleep.  I decided instead to make some art.  It wasn't easy- since my hands have not been very cooperative- but I did my best.  I wanted to draw how I was feeling at this moment.

If I were my own art therapist, I would notice how I look pretty close to drowning.  That would feel accurate.  I would also notice how my ears aren't submerged.  Maybe that is because I really do hear all of the positive blessings and prayers that I am offered.  I would also notice that my eyes are closed- and I would wonder why.  Not sure I know the answer.  Perhaps I don't want to see what is happening.  Maybe I am trying to stay inner focused.  My mouth is underwater - which means it has to remain closed.  Perhaps there are certain things that I can not speak of.  Interesting.  The top of my head is above water - which may speak to how I need to keep my inner thoughts out of the murky depths below.  What does the water represent?  The pain, the emotions, and all of the things I can not control.

After I finished making my art piece, I was able to leave my room and join my family.   I didn't feel great, but I did felt better.

checking in

I haven't written in a while.  I read somewhere that when you are diagnosed with cancer you will underestimate how tired you are going to be.  I know that this has been true for me.  I kept fantasizing about all of these things I would do with my time off.  I would write books, play with my children, bake bread, make art - and then the reality set in.  Each round of chemotherapy is exponentially more exhausting.

I am tired.  My bones and muscles ache as if I ran a marathon, only I have hardly moved.  Everything feels like it takes ten times the amount of effort that it would if I was well.  The neuropathy in my fingers even makes typing on the computer unpleasant.  I am irritable.  There is a bitter metallic taste in my mouth that will not go away- no matter what I eat.  I am miserable.   Just prior to getting chemotherapy this last week,  I came down with the flu.  Which has made everything worse.

Prior to cancer, my primary health concern was my lungs.  Asthma had created scar tissue- which had created nice little pockets for fluids to settle- which in turn would become pneumonia.  Last year I had pneumonia probably five times.  At this moment, I can feel the fluids build up in my lungs.  Having a suppressed immune system makes this notion extremely frightening. 

Yesterday, I tried drinking tons of fluids and resting- but my immune system is in some need of assistance.  And so, I am awake at 5:30am waiting for my family to wake up so that they can take me to the emergency room.  I have packed a bag with my kindle and some drawing materials - my slippers- and my cell phone.

I have some art that I have done recently that I am excited to share - but it will have to wait until I have recovered from this lung infection.  In the mean time, I would gladly accept any well wishes or positive energy you can spare. 

Chema-ballerina

I try to do two things in preparation for the appointments that I have with my oncologist.  The first is  I keep an ongoing list of questions for the doctor.   As soon as something comes up, I write it down.  I have learned that I can not trust my brain at this juncture to remember much of anything.  It doesn't matter how important it is- I will forget it.  The second thing that I try to do is keep track of the side effects that I experience with each chemotherapy treatment.  The first time it was my little gingerbread girls.  The second and third time, I just made lists.  I think my doctor was a bit disappointed with the lists, given the artistic care I put into my first side effects checklist.  So, I decided that I needed to make something more entertaining for my doctor this time around.  I also feel like art is my way of consolidating the information I am experiencing.  I can take them out of my body, put them down on paper to remember, and then put it away. 

What I didn't want was for my little side effects drawing to be a big downer.  Not only does that feel pretty predictable- neuropathy and nausea are kind of bummers, it also doesn't feel very useful.  I enjoy laughing.  My students often comment on my ability to laugh, even when teaching about pretty hard topics.  As a therapist, I love to make my clients laugh.  Of course, we can't always laugh- and I always make room for sad emotions.  But therapists that make you cry all of the time bore me.  Aren't most people seeking therapy wanting to find ways to feel better?  Finding ways to laugh through pain-  connect with the comedy- is healing.  Smiling is an amazing coping mechanism.  A lot of scientific research has been focused on how smiling is inherently good for you!  It changes your mood, boosts your immune system, and releases endorphins, serotonin, and natural pain killers.  Smiling is like a super powerful drug!  Smiling also lowers your blood pressure, reduces cortisol production, and relieves stress. 

"When you smile you don’t only appear to be more likable and courteous, 

you appear to be more competent.” (Ron Gutman)

I inherited my mother's love of art and my father's love of laughter.  I am extremely blessed and grateful for both of these things.  So, I decided that I would make a drawing that made me laugh. 

And so... Chema-ballerina was born.

I know, the side effects aren't extremely funny- but when I put a tutu on it- it made me smile.

And if you want to watch a great Ted talk by Ron Gutman on smiling- check this out :-)

Emerging

I finally feel that I am re-surfacing from my last chemotherapy treatment.  One more down, three to go.  I need to remember that on that day in the cycle where I feel like I am falling apart, crying, hurting everywhere, and that I can't possibly do it- I am doing it... and tomorrow will be better.

I have many things to be thankful for this last week.  For all of those who took care of my children, made me yummy food, called to check in, sat at my bedside to sage my soul- Thank you.  No matter how horrible everything may feel, I only need to sit and close my eyes to understand how incredibly blessed I am.  I hope that I can remember this long after the cancer is gone.

I also realized that I have reached another milestone in my treatment.  I have woken up over the last week feeling as if I was on fire.  My bald head moving from intense heat to chill from air meeting sweat.  The women in my online support group have been exchanging tips - keeping washcloths and thermoses of ice water by the bedside, breathing through the flash without movement (moving seems to only intensify the heat), taking a sleep medication to just keep from noticing.   Today an older woman reminded me that the reason she doesn't have the hot flashes is because she is post-menopausal.  My body is transitioning away from that of a young woman.  And for some reason, my heart is breaking.  I don't want this - but this is the only option if I am to survive.  I hate this.  Last week, I realized that I wanted a third child that I could name Beckett.  Okay, maybe that would have never happened- cancer or not.  But it irritates me that I have no choice.

I also understand that I am lucky.  I have been blessed with two amazing young children - a girl and a boy.  So many people on this same journey are also having to worry about the possibility that they may never have children.  They are bogged down in researching egg freezing and the possibility of not taking the medicines that their doctor's are requiring.  My heart breaks for them too.  So, as I lay in bed after a particularly awful hot flash, I decided to draw another self-portrait.  I guess I wanted to capture me before I change completely.  I also want to find a ritual to not only say goodbye- but to also say thank you.   Thank you to this feminine body that carried and grew my two children, that nursed them and comforted them, that changed as my hormones surged and fell.  I will close my eyes and get ready for all of the amazing things you still have in store for me.   

November - Giving Thanks

The energy of the steroids are gone, and I am left with a feeling of complete exhaustion.  I am brimming with aggravation and nausea.  My muscles ache and I feel like crying.  I can feel my body bracing for the side effects that will follow.  I am struck by how much the exhaustion builds from cycle to cycle.  It makes me wonder what it will be like when I am completing cycle six.  But none of this thought process is helpful.  I know it.  Someone in my community reminded me to find ways to smile- and I think she is right.  I wouldn't be able to hear it from anyone other than another survivor.   It is hard, but I have so much to smile about.

So, I have decided that I am going to try to fill this blog in November with those things I am thankful for.  I may have a day or two where I sit with sadness, fear, or anger - but I won't let it overtake me.

I started this post yesterday, but then became too ill and had to go to bed. So- I am focusing on both of my children for days one and two.

 Caya Papaya & Leo the Lion

I had my children late in life.  I was thirty eight when I was blessed with Caya and 41 when I had Leo.  I sometimes wish I had the energy of a young mother, but know that being an older mom has its perks.  Someone wrote that having children is like having your heart walk outside your body.  I completely agree.  They fill me with wonder, love, worry, and at times complete frustration!  But I wouldn't change a single thing about them.  I am so blessed that these two little people belong to me- and that I belong to them. 

This picture was taken at the hospital, just four days before I received my diagnosis of breast cancer.  My son was getting his tonsils removed.  My daughter was so worried about him- as we all were.  But he was brave and amazing, as usual.  It seems like ages ago now.  I am thankful that my little ones are healthy, smart, creative, and that they love each other.  And I am thankful that I get to find out more about who they are as people each day.  These two little beings are what will keep me fighting and smiling- no matter what.

The Big Girl Chair

Tomorrow is my third round in the big girl chair.  It could be the steroids I have to take prior to my infusion or it could be anxiety- but I am wide awake and it is 2:30am.  What better time to ramble here on my blog!  Hopefully this will be coherent, but if not- I will delete it tomorrow.

I am having the most bizarre emotional experience around chemotherapy.  If I was my own art therapist, I would take out some wax paper and have myself draw each different emotional experience -and then overlay them to create one cohesive picture.  I don't have the emotional energy to cut pieces of wax paper- and I don't think it would translate very well in my scanner, so instead I made this piece of art on photoshop and did transparent layers. I tried to limit the amount of time I gave myself- just because I didn't want to think too much about it and become weirdly perfectionist.  This isn't about the final product.  It is about me sorting out what I am feeling.

Layer One - Date Night

 

Okay- so the thing I love most about chemotherapy is the five hours of uninterrupted time that I get to spend with my husband.  We talk, laugh, have lunch.  He takes care of me in a way that I feel supported and loved.  It is wonderful.  With two little ones at home, it is difficult to get time together to even have a conversation.  So, I put this image on top.

Layer Two - 1/2 way there

 

 

So with this chemotherapy infusion, I will have completed three of the six I am scheduled for.  I visited my doctor today and he was incredibly happy about my amazing disappearing tumor.  I am cautiously optimistic.   He is too.  So this layer is all about the positive emotions I have around this diagnosis.  I love my doctors and spending time with Leo (who I call sunshine).  This is definitely the next image in my layers.

Layer Three - The Uncomfortable, Painful, Yuck

 

 

This one is not for the faint of heart.  Chemo sucks.  My body aches, my stomach is a disaster area, discomfort everywhere, my head throbs, swollen, and tired through my bones.  The intense portion only lasts a week- but I still loathe it.  My hair is continuing to fall out, and my nails feel fragile.  I added a new symptom this last cycle - Neuropathy.  For sixty seconds, it felt like all of my fingers were on fire.  Extreme pain and then it disappeared.  I experienced it in my toes the next day.  My oncologist said that unfortunately, this side effect is also cumulative- so he anticipates it might be worse this cycle.  I am trying to arm myself with extra supplements and a positive attitude- but it isn't always easy.  When I look at this piece, it also represents fear.  I buried this layer under all of my happy feelings.

Layer Four - Loneliness 

 

 

This layer is about isolation.  Because of my blood counts - and the added risks due to lung complications, I am forced to stay home for nearly two weeks.  I will try to allow myself to go to my support group, but other than that I become a recluse. In the beginning, I am even too sick to spend much time with my family.  I stay in bed and feel miserable.   I sometimes feel like I could disappear.  I hate this one the most.  

The emotional journey to chemoland

 

 

I played with the transparency until I felt that the picture was what I wanted it to be.  It feels odd- chaotic- and uncomfortable, so I guess I did it right.  As for a directive, I really enjoyed it.  And now maybe I can get some sleep.  

Good night.  Wish me luck- and as we say in chemoland - No SE!!!!

(SE means side effects)  

 

Coloring Calaca 2

Last night I drew this calaca and actually worked on a painting - which is pretty good since I feel a complete and utter lack of motivation to do much of anything.  I know I will be out of commission for the next couple of weeks, so I am going to try to get up and do something fun with the family.  Maybe the zoo?  Which is hard to even imagine because I feel bone tired.  But possibly it is a matter of momentum, and once I begin moving it will be easier.  Hope everyone has a lovely Saturday.

If you click the skull above it will take you to a downloadable version to color.  I gave this one a mustache in honor of all of my high school clients.  Once I ran an entire group about stress with everyone in the group, including me, sporting awesome fake mustaches.  I miss my clients. 

Calaca to Color

People ask how I am doing.  Physically, I feel pretty good.  I had a strange burning sensation in my fingertips a few days ago (my doctor confirmed this is neuropathy) - but I have been taking extra L-glutamine, and it seems to have gone away.  Emotionally, I am not doing quite as well.  I am already anticipating next week and my chemotherapy infusion.  It is hard to willingly allow yourself to do something that you know is going to make you feel like utter hell.  But I also understand that my tumor has been shrinking at an amazing rate.  So, I will go and pray that I will have minimal side effects.  I am trying to clean my house, get meals ready for next week, and enjoy my children.  I always feel better when I feel prepared.

So, I decided that I am going to try to do as many little Calaca Coloring pages as I can to help my mind stay focused on the present instead of dwelling in what might happen next week.  Kind of like a zentangle (a kind of mindfulness doodle technique).  So, if you click on the skull above, it will take you to a place where you can download my little skull to color.  Coloring is another awesome way to calm your body, focus on the present, and regulate emotions.  And below, I am including a link to a blank skull sketch- so that you can do your own doodle!  And of course, for more calaca love visit Rebecca's blog here.

Monday Calaca

   
     It was a hard weekend.  Physically, I am feeling fine.  Just a few fleeting side effects, but on the whole, so much better than I was a week ago.  Emotionally, it was challenging.  I am generally a positive person.   I work with youth who are often hopeless- and it is up to me to hold hope where sometimes it may feel like there is none.   I am well versed in understanding how to be grateful- and to know that things can always be worse.  This weekend, I lost myself to fear.  I could blame it on late night internet searches, where I read the angry responses to the "pink campaigns" that often focus on awareness and don't give nearly enough resources to research.  I read about women who are stage four and are labeled terminal and how these women were often first diagnosed with stage 0-3 cancer.  I read about how 20% of breast cancer patients will go on to become stage four.   And then I stopped reading and cried.  I am convinced that I will survive and move through this.  I know in my heart that I will be one of the 80% - and that I will be stronger as a result of this.  But for a moment this weekend, I let death take residence in my psyche.

   So last night, I turned to art.  I visualized death as a clown- colorful and silly.  And then  I imagined death riding something equally non-frightening- like a bunny.  Lastly, I visualized the bunny hopping away.  After I finished drawing, I went to sleep.  Aside from a strange dream about accidentally going out of the house without any head covering and being mortified,  I slept peacefully.  I have only one week of feeling normal before I have another chemotherapy infusion and begin the cycle of nausea, pain, and exhaustion.  I am not going to waste it being afraid.

   For more calaca love, check out Rebecca's blog here:)

Taking Pictures

When I was in my twenties, I can remember weekend nights when I would tell my friends I was busy.  I would then pull down the shades and spend the evening with my camera, tripod, and a multitude of costumes.  As a fine arts major, I always had an excuse for playing dress up.  I would take many of my photographs and use them as studies for my paintings.  Although on the surface, this kind of thing might reek of some undeniable narcissism on my part- it had a lot more to do with the opposite.  I was uncomfortable in my skin and I had no idea who I was supposed to be.  Through my pictures and paintings, I forced myself to be in relationship with a subject matter that often felt incredibly foreign.  I am not sure how I became so painfully insecure.  I wish I knew so that I could do everything in my power to ensure that my daughter doesn't suffer the same fate.

At some point, I began to understand that I could really be whatever I chose.  Through painting, I understood my face.  The shape of my mouth, the color of my eyes, the line of my jaw.   I would look at others, and notice how we shared characteristics - and if I could find beauty in them, I must also be beautiful.  I began to appreciate that I did not conform to what the standard of beauty was in many ways, but it didn't matter.  I could be my own type of beautiful.  Of course, I now realize that acceptance of your physical self is a moving target.   With each passing day, the physical me changes.  I remember a few months ago having a realization that looking back at my younger self,  I can indeed see how I was so much prettier than I ever gave myself credit.   I wonder if when I am eighty I will look back at my 45 year old self and think the same thing.

Cancer is not pretty.  I pass mirrors and don't recognize myself.  A bald and moon shaped face stares back at me where I once was.  (They call it chemo-bloat) My physical body is pale and exhausted.    So what can I do to accept this new me?  Take pictures of course!   After the kids were in bed, I spent time putting on my makeup and had a photo session.  I would highly recommend it.  I don't know if I accept what I look like as of yet, and I know it will continue to change.  But forcing myself to spend time with my new self feels healing.

Hope you enjoy today's calaca:-)  For more calaca love, visit Rebecca's blog here!

Calaca for 10-11-12

Second chemotherapy session completed - four more to go - but I won't say I am 1/3rd done until after this week, since I now know from experience the next week is the hard part.  I am trying to get enough fluids, eat right, rest, and be gentle with myself.  On top of all of the physical discomfort, the sadness of my mother and sister's return home to Texas has been challenging.

This calaca is one from my monster series.  She makes me smile- which is what I need today.  Here is her cute little friend.

 

Hope everyone has a beautiful Thursday.  I did wake up this morning to a lovely package of delicious cookies from my sister in law with the most beautiful cards from my niece.  So things are looking up.

 For more Calaca love, visit Rebecca's blog here.

Maybe you can leave a comment of a good movie I can watch that will make me laugh this weekend.

No sadness- I am having enough of that.  Time to turn things around.

Crowning Glory

My hair has always been unruly, wild and unmanageable.  A thick curly mass that could not be forced into any of the cool hairstyles of the day.  But I would try.  I can remember attempting desperately to straighten it - only leaving it more frizzy and disastrous.   At some point in my late twenties, I realized that this war I was fighting was not one that I would ever win - and so I surrendered.  And when I did, it was magical.  My hair formed ringlets and waves, effortless curls, romantic and even beautiful.  I began for the first time in my life receiving compliments regarding my hair.  And I let it grow.  My hair became part of my identity.  When describing me, people would begin by discussing my hair.  I would dye it and spend time creating intricate braids and buns.  My hair was an extension of my creative self.  People would stop me in the grocery stores to ask me about my hair.  And I loved it.

It is essential to understand that in Mexican American culture, hair is extremely important.  Upon having both of my children, the first question my mother asked is whether or not the babies had hair- and if they did have hair, how much.  You can even buy baby wigs at the Latin flea markets in my hometown- just in case your baby was born lacking.  Hair is also connected in Latin culture with femininity.  The Latina bombshell always has long amazing hair.  This is the culture that I grew up with.

The first thing I asked my oncologist was whether or not I would lose my hair.  He said that I would.  For some bizarre reason, that was more painful than the previous conversation I had with the surgeon about losing my breasts (more about my feelings on that subject much later).   I tried looking up on the internet natural ways to save my hair, but came up empty handed.  Of course, there are those that use Cold Caps - icy helmets that freeze your scalp so that the chemotherapy drugs leave your hair follicles alone- but the cost of such extravagance was too much for me.  I couldn't stomach spending so much money for what felt like was just hair.  It would grow back.  I could take the kids to Disneyland for the price of cold caps!

There is another part of me that is quite sure that my journey has a meaning.  That there is something about fighting cancer that will define a new purpose for who I am and how I move through this world. My life has centered around serving others- and this would be no exception.  It is what I love more than anything else.  So, in some ways, I need to experience every aspect of this journey.  Unfortunately, that includes losing all of my hair.  It is a rite of passage that I am not comfortable missing.   It is also a rite of passage that has been wrought with tears.

I think that when I am bald, it becomes undeniable that I am sick.  That I am fighting something larger and more scary than I have ever fought before.  I will have joined the sisterhood.  I will be forced to face my mortality.  It will be real- and I won't be able to hide in a crowd.  Everyone will know.  This person, who has built an identity around being strong and fiercely independent, may be seen as weak or someone to be pitied.  I will be transformed into the "other"... "other" people get cancer.  I will be faced with the fact that I really can't do this alone.  And that I need people.  And that is scary.

Monday, I cut my hair into a cute little pixie cut.  Wednesday was my birthday, and it began gently falling out as I touched my head.  Saturday, I couldn't stop the shedding.  My head felt like it was on fire, irritated, and prickly.  With tears and a heavy heart, I had my little sister shave my head.  I wore a wig for the first time that afternoon.  Today I wore my first headscarf.  I am surviving.. and actually, now that it is gone, I am feeling some relief. It is time to start focusing on the next part of this journey.

My calaca for today is a little drawing I did commemorating my visit to the Ocean today in my headscarf.  For more October Calacas visit Rebecca's blog here.

Birthday Calaca

Yesterday was my birthday.  For the first time in a while, I didn't for one moment lament getting older. I will cherish every birthday I have from here on out.  I promise.  But just for the record, I am planning a huge party for the next birthday.

My sister and mother are in town so we spent the day at the Academy of Science and had lunch in Half Moon Bay.  It was a lovely day.  I worried a bit about the large amounts of hair that I am beginning to shed- and I know it is part of this process.  I was going to call this process "ugly" but decided that it is best that I not judge it so harshly.  I just cut my hair very short in anticipation of the impending loss.  I will write more about hair in another post- because I think it warrants an entire discussion.  Suffice it to say that the hair issue has been difficult for me.  I am shedding tears for each escaping hair and I know this is to be expected.

So, my sister took this picture today at the museum and I felt it was perfect for my daily calaca.  I hope you enjoy it.  For more calacas- visit Rebecca's blog.

October 2, Calaca

So this is my second Calaca in the October series.  I love October!
For more cool skulls, visit Rebecca's blog at this link.

Today I honor my mother.  It is her birthday.  She is strong, smart, talented, and beautiful.  I am super excited because she is coming with my sister to visit tomorrow.  This is one of those times where I feel like a little girl desperately wanting my mother to come and comfort me.  My mother is also a cancer survivor.  She was diagnosed with Hodgkin s Lymphoma four years ago and has been in full remission.  I remember the pictures my sister took of her shaved head - especially the ones where they are laughing after having given my mom a very cool mohawk.  At the time, I was pregnant and couldn't travel to be at my mother's side.  It was hard.  I think I have a better understanding now than I ever could have about the kind of struggle my mom endured.   I am so looking forward to her visit, but I am also already sad that she will have to leave.

October

     October has always been my favorite month.  So many people in my life have October birthdays- including me!  I also have a penchant for all things dark and mysterious - which October is full of.  And Halloween- a holiday devoted to dressing up and being creative- is my absolute favorite.  So, having chemo twice during the month of October completely sucks.   Halloween will fall on a day that I will be my most sick.  This is especially hard since I have little ones that count on me to make the holiday special.  I am sure I will figure something out - but I am disappointed.

   Rebecca Brooks is an awesome artist blogger who I have had the pleasure of working with in the past on the auctioned altars for Oaxaca Street Children Grassroots.  Today, she invited me to participate in a fun "la calaca a day- La Calaca Love" for the month of October.  Of course, I love all things skeletal- and thought why not?  I also love that Dia de los Muertos spirit of not fearing death- but laughing instead.  Living life without fear of death is an important thing to hold on to, especially at this particular juncture in my life when anxiety can keep me up at night.  So, I am going to try to participate as much as I can... they may not be long posts, but just a nice picture each day.   Luckily, my artist portfolio is full of them.  For more cool skulls, visit this link.
 
  Happy October.

9 days post chemo

I haven't written since my first chemotherapy infusion... mainly because I have just been trying to cope.  I am receiving standard dose Taxotere & Carboplatin.  I also began receiving the herceptin that I will be getting for the next year.  The infusion itself was very easy and almost pleasant.  It was nice spending time with my husband and relaxing in the infusion room.  It went so well,  I even drove myself to my support group in Palo Alto.  No problem.  I was ready for anything....

The reality set in pretty quickly.  I won't go through all of the gruesome details, suffice to say I had some pretty horrific side effects and ended up in the emergency room on day three post chemo.  My temperature spiked but the nice people in the emergency room gave me lots of IV fluids and sent me home.  The weekend was particularly difficult - lots of nausea, cramping, exhaustion, and overall discomfort.  Think the worst flu you have ever had in your life with the added bonus of knowing that you were going to have to do this many times over.  I started to feel human again early this week.  Today- aside from feeling like I gargled with razor blades- I am feeling much better.  Some say the side effects have a cumulative effect- I am hoping that isn't true.  I am hoping that next cycle I will know what to expect and be better prepared.  I am scheduled to do this five more times.  Sunday that didn't feel doable.  Today it does.

My mantra has been - "this is temporary- and I will feel better."

I did want to share some art that I have worked on for the last week.  I wanted to create a piece of art to track my symptoms so that I can share it with my oncologist at my next check up.  The pinks and oranges represent health - the greens and blues represent sickness.  I also wanted to do this so that I could look at it and remind myself that these horrible feelings are temporary.  I will get through this.

I feel like there is so much going on in my body- that there is no way I can be a good reporter for my oncologist without some record... and being visual, this was more fun than just writing things down.  You can click the image below to download your own blank template. 

So next cycle, I have learned the importance of staying hydrated and moisturized.  I have also learned that there will be days I can do nothing- and days that I am capable of still doing quite a lot. 

understanding cancer when you are 5

I spoke to my daughter two weeks after my diagnosis.  I guess she knew something was amiss.  I was quieter than usual, crying erratically, and going to the doctor every other day.  She yelled and cried and told me in no uncertain terms that she needed to know what was happening.

My daughter is a super insightful, creative, emotional, and smart little being.  I had already been thinking about what I would say.  I had bought a bunch of "mommy has cancer" books a week after being diagnosed.   All of the books I purchased were wonderful- but I thought I would share two of my favorites.

Butterfly Kisses and Wishes on Wings

The images in this book are beautiful and it gave just the right amount of details for my daughter.  This book explains what cancer is and helps give hope.   The book is also translated in Spanish.  This was my daughter's favorite as well.

My Cancertankerous Mother

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If you have ever had cancer, you know that you can get pretty aggravated.  Stress is high and all of the things that go wrong get magnified.  Plus you are on a crazy chemotherapy cocktail that does a number on your moods.  Although I try my best, sometimes cancer stands in the way of my being the mommy I want to be.  This book does a nice job of explaining it to my daughter.

I also talked to Caya's new first grade teacher.  Not an easy conversation, "Hi, I am Caya's mom.  I thought you should know that I have just been diagnosed with Cancer.   Caya is extremely sensitive, and I am worried about how this will impact her here at school."  So far, I have been right.  Caya cries and talks about how she is worried about me.  She has also had a hard time focusing

So I bought these as a way of hopefully connecting us when I am in the hospital and she is at school.  I can wear one, she will wear the other.  When we are thinking about each other, we can touch our bracelets and know that everything is okay.

 

So, I also thought I would share some of the art work that she has been doing to help herself make sense of what has been happening.  I didn't make up any of these directives, they all come from her own little being.   Caya is a born art therapist.

This is the first piece she made for me.  It is a group of happy owls that are setting out to make me happy.  It was folded in half.  Inside the owls have lessons for me.

 

Inside was four little paper doll owls.  Each one wanted to remind me to do something so I would feel better and be happy.  One reminded me to rest, another reminded me to be patient, a third reminded me to sing and the fourth reminded me to make art.

Caya is most distressed with the fact that I will lose my hair.  She has begun drawing me without hair, I think as a way of trying to accept it and make peace with it.

I have some ideas of things we can do together.  Since Halloween is coming up, I thought it would be fun for her to buy some of her own wigs.  Although our hair is very similar- long and very curly- my hair is brown and red, hers is a very light brown/red with beautiful golden strands through out it.  She was very excited the other day and asked me if maybe I could get a wig that looked like her hair.  Then we could be twins.  Have to say that I love the idea.

And of course, I also find these little love notes for me everywhere.

She is such an amazing little soul.  I will keep checking in with her and make sure that she is okay during this time.  I realize that I am not the only one carrying this diagnosis.  My whole family is.  But together we are strong- and we will survive.

My two year old just gives me lots of hugs and tells me I am his huggy wuggy... which is about one of the most healing things you can get!  He understands that mommy is sick- and I have read him some of the books as well- but I try not to overload him with details.

Both of my children will have birthdays in the next week- and I will not be able to throw the kind of creative birthday party that they have become accustomed to.  But hopefully, we can still have fun and they will know that they are loved.  Another upside to this whole cancer business, is the amount of time I have been able to spend with them lately.  Without worrying about work or teaching, I can just be present with them.  Play.  Teach.  Love.  It has been wonderful.

If you have any other ideas about fun things to do with kids during this time- let me know!  

Know your enemy

So, a lot of people tell you not to spend too much time looking at horror stories on the internet when you have been diagnosed with a life threatening illness.  I would agree that there are probably lots of websites to steer clear of- but there is also a ton of useful information out there.

Prior to having cancer, all I really knew about it was that people die from it.  All I really knew about chemotherapy was that it killed cancer but also killed lots of good cells.  I knew that you might become bald and you would get really sick.  But now I know so much more- okay maybe too much more.  But I thought I would share some interesting other possible Side Effects (What we in cancer support-group land call SEs) that people don't often know about chemotherapy.

1. You will quite possibly lose your hair- but the worst thing many people say is losing your eyebrows, eyelashes, and nose hairs.  You really do need nose hairs.  It is quite inconvenient not to have any.
2. Many people will have a port put in for the chemotherapy to be administered through.  Chemotherapy medications are pretty toxic and you can quite easily "blow a vein" if you just do it intravenously.  (I am having my port put in tomorrow... I am sure I will have more to say about this later)
3. You can get extremely uncomfortable mouth problems.  Your mouth can become desert dry and you might develop horrendous mouth sores.  
4. Your sense of smell becomes acute and people often claim that they can smell the chemotherapy drugs in their body.  It supposedly doesn't smell very good.
5. Chemo patients might prefer a plastic fork over a metal fork because the metallic taste becomes overbearing.
6. Your skin gets super dry and feels like rubber.
7. Because chemotherapy drugs attack fast growing cells in the body, not only your hair is affected.  Your nails are too.  You might get ugly brown lines on your nails or other discoloration or ridges.  Some people's nails simply fall off.
8. Contrary to popular opinion, people often do not lose weight during chemotherapy.  The drugs are many times given with a large amount of steroids which create ravenous appetites.  Chemotherapy also tends to slow down your metabolism.  Nausea is a problem, but today there are many effective anti-nausea medications that really have made a difference.
9. Chemotherapy leaving your body can feel like a bad bladder infection.
10. Many people are now given drugs to help with the low white blood count that is often an unwanted side effect of Chemotherapy (Neulasta is what I will be given).  Unfortunately, these drugs can cause excruciating bone pain.
11. Many of the chemotherapy drugs given to women can cause them to go into menopause- especially the older you are.
12. Chemotherapy medications can cause diarrhea and from what I have heard, some of the worst constipation you have ever had.
13. You might swell up- especially in the face. As if being bald isn't enough.
14. You are incredibly tired, but also can struggle with extreme bouts of insomnia. 
15. Chemo brain! - more about this later.
16. And lastly, you can end up with nerve pain and numbness.  I have heard people talk about this in their hands and feet.

There are other side effects too, but these seem to be the most common.  It is important to note that Chemotherapy is not my enemy.  I think of it more like some rogue soldier I have in my corner.  A little unpredictable, but I have faith it will get the necessary job done.  Kind of like how Dirty Harry always got the bad guy, but there were lots of upside down burning cars all along the freeway where he chased him down.

 It is part of this journey.  And I am lucky that because of all of my research,  I have put together a nice chemotherapy care package with lots of remedies for the above ailments.  I will persevere.  And who knows, perhaps I will be one of the lucky ones who has only mild discomfort.  Some people work through out chemotherapy treatment.  I heard of someone who traveled out of the country in between infusions.

So the title of this post is more about my latest piece of art.  I needed to have a visual for cancer.  That way, when I am doing visualizations about destroying it- I know what I am visualizing.  I made this watercolor tonight.  I was going to do a nice watercolor of a port, but they really aren't very interesting - and plus I might throw up if I think too much about it.

Wish me luck tomorrow.

Visualizing my future

Friday was my last day of work before I begin disability.  This is super hard for me because I come from a long line of hard workers.  My work as a therapist is connected to my worth.  So to be home will be a challenge.  But I am also looking forward to taking on more at home.  Being with my son during the day feels like a gift that cancer has given me.  I am also worried about the financial impact of not working- but trying to trust that everything will be okay.

I have lots of ideas for art that I will begin on Monday and can't wait to share.  My chemotherapy was supposed to begin on Tuesday, but now we are scheduled for September 18th.  The waiting feels like it is literally killing me.  I want to get started.  I am tired of anticipating this horrible thing.  Perhaps it won't be as bad as I imagine.

Today I thought I would share a piece of artwork that I made a couple of weeks after my diagnosis.  I watched a Ted Talk with Patti Dobrowlski which I have linked to below.  She is a wonderful speaker who talks about using your imagination and visual imagery to help you recognize what you want in your life and to motivate you to obtain it.

 
She is also kind enough to include a link so that you can print up your own "Draw your Future" template.  You just need to give her your e-mail address.  I gave her my address and haven't been inundated with junk mail so I am pretty sure you are safe.  I thought I would share my finished piece with you.   I see a life free of cancer- where my children, husband, and I are happy and healthy.  Where money is plenty.  And I have cute new short sassy hair cut.  I believe it is going to happen.  And I will do everything in my power to take care of myself and work with my doctors so that it does happen.

Sleep

This has been another busy week of appointments.  I met with my oncologist on Monday.  He was extremely nice and drew lots of pictures for me, which as a visual learner is much appreciated.  We made a plan to begin chemotherapy on September 11th - although that might change since I have an appointment with the dentist the day before.  I hope I can make it work.  I want to get started.

I also met with my surgeons who were also super knowledgeable and compassionate.  At this point, I am beginning with Neoadjuvant chemotherapy - so I won't be seeing my surgeons again for a while.  My cancer is triple positive - Estrogen positive, Progesterone positive, and Her2 positive.  The positive thing about this is that there are targeted ways of treating this kind of cancer.  Of course, this means that I will have a port for a year so doctors can give me Herceptin- and I will be taking Tamoxifen for the next five years.  But at this point, knowing that I will be around to take something for five years feels like a blessing.

I have seen a lot lately about sleep and breast cancer in particular.  My mother even called me to tell me she saw a clip on the news about the connection between a lack of sleep and breast cancer.  This of course is of significance because I hate sleeping.  I find it to be such a waste of time.  Of course, I would love sleeping if I could do it from about 2am till about 10am... but it is hard to hold down a regular job and not be somewhere earlier than noon.  So, my normal schedule involves going to bed around 1am and waking up at 6am.  Five hours a night has always felt like plenty.  Sure, I get tired at around 2 or 3pm, but I look around my office and it seems like everyone is tired around 2 or 3pm.  And I get so much done in the wee hours of the night!  I can paint, read, write, plan, without my beautiful little ones expressing every need imaginable.  The studies do show that the correlation is only in post menopausal women, so perhaps this isn't the reason for my own breast cancer.  But just to be safe, I probably should get more sleep.  I hate cancer.

A big problem with trying to make changes around sleep now is that worrying about cancer keeps me up at night.  It is in the stillness that my mind wanders.  My dark thoughts are given a stage to wreak havoc on my psyche.  I lay listening to my partner's breath.  I move from side to side trying to find the elusive comfortable position that will allow me to peacefully fall asleep.  I focus on my own breath and remind myself of all of the techniques I have taught my own clients for the past fifteen years, but come up empty.  My brain is moving fast and furious- and although I try, stopping it feels impossible.

So, I thought perhaps tonight before I go to bed, I would draw a picture of what is going on in my mind. Of course this drawing only scratches the surface.   I drew myself without hair- because I am trying to acclimate myself to this soon to be reality.  My daughter has already started drawing me without hair as she prepares herself.  (Maybe I will share some of her artwork later).  So here is my latest attempt to heal.

Three weeks since diagnosis

It is hard to believe it has only been three weeks.  Three weeks of having my life turned upside down.  On the positive side, I still cry a little every day- but it doesn't feel as overwhelming as it did before.  Not sure if I am getting used to it, or just getting better at denying it.  Whatever the case, I am liking it.

The biggest thing I did this week was to go to my first support group.  I sat in my car watching women with scarves enter the building and wondering if I had the courage to join them.  As a therapist, I have facilitated many a group in my life- but haven't been a participant.  I knew it would make it real.  I was terrified.  But I summoned all of the courage I had to get out of my car and follow them.  It was such a healing event.  To be surrounded by women who knew what I was up against, who were sad for me but didn't pity me, who were full of knowledge and experience.  In a matter of two hours,  I felt like perhaps breast cancer wasn't going to end me- but was rather going to open me up to a life that I couldn't have imagined... and not a bad one.  I loved these women I met.  Strong, funny, empathic, smart and connected.  And I was going to be one of them.  When the group was over, we gathered outside the door.  They were helping each other with hints around how to lessen the burns of radiation.  They turned to me and I thanked them all for making my journey seem manageable.  They all smiled and hoped I would come back to the next group.  Everyone hugged and we went our separate ways.  And I left smiling.  I can't wait to go back in a couple of weeks.

I wanted to do an art piece around support.  There is an art directive I use with my clients where I have them trace their hand and then extend each finger in their drawing to create a multitude of branches.  On each branch, they make leaves and fill the leaves with things that will support them on their journey.  I talk about how everyone has bad things happen to them.  Happiness isn't about living a life without struggle.  It is learning how to cope when things are hard and not losing sight of all of the things we have to be grateful for.  Each leaf represents the people, places, activities, coping strategies, and internal strengths that I am connected to that will help me to heal.  The more leaves you have on your tree, the better off you are.  I have a beautiful tree full of leaves, and for that I am grateful.

Plus- my PET scan came back and there is no additional cancer.  I know everything is going to be okay.

 

If anyone out there makes a tree of support, I would love to see it.

Much love,

me