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.