Anger Management

I bet that got your attention.

A lot is written regarding how cancer can make one learn what is important in life - how to be grateful - and how to slow down.  People talk about the gift that cancer is.  Like this woman here.

And although much of this is true, cancer is also a pain in the ass.  It can be a constant barrage of appointments and disappointments... exhaustion and discomfort.  Not that there isn't some good times to be had (I absolutely adore the amazing women I have met through this journey), but let's face it, a great deal of having cancer pretty much sucks.  And the whole time this horrible thing is happening, I secretly wonder... "Why?"  I took good care of myself.  My last physical was excellent.  I eat organic foods.  I do good work in the world.  I don't drink or smoke ...  But I put on a brave face and try to be thankful for my crazy hedgehog hair and my current lack of nausea... but underneath the surface, I can be seething.  Not always... but sometimes. 

Sometimes, try as I might to hold the anger at bay, it seeps out.  It seems that the general victim of my complete anger is the valet company who parks my car at the hospital.  They drive me completely mad.

Before you think of me as an elitist snob worried about her valet parking, I have to say the only reason I use the valet is because I have to.   The hospital is under a lot of construction and the parking garage is quite a distance away.  The walk is along lots of roads with  construction- which is difficult for my asthma.  I have limited amounts of energy - and would rather use my energy to play with my kids or make art rather than walk along side traffic and construction for twenty minutes.  If you don't walk, you must take a van or bus to get to the cancer center which adds an additional twenty to thirty minutes onto my commute each way, due to the circuitous route to the hospital due to the construction and the wait for the van.  

So, here are my valet issues.  There are several parking attendants whose sole job is to just direct people around the loop in front of the hospital.  I have on more than one occasion been told to please move forward - and when I don't, because I would hit a pedestrian if I did, they wave their hands all frantically as if I am an idiot.  The other problem with the valet attendants is that they are rushing amid the chaos and on more than one occasion have darted in front of moving cars and nearly offed themselves.  Whatever system that they are using is extremely inefficient and chaotic.  It reminds me of those times when I have gone to a store where none of the customers at the cash register understand how to form a single organized line.  These things unnerve me.  My over-controlling nature kicks into overdrive and I begin telling people what to do.  One day I drove to the clinic and all of the attendants were wearing straw hats.  I imagined the meeting they held.  "What is wrong with this operation?" they asked each other.  Then they all decided that the problem was a deficit in straw hats.  Perhaps if they all had the same hat, order would follow.  (I know, they have the hats so that they don't get sun damage. - which I am glad about.  And they all do look very nice in their straw hats, but still.)

I do not like chaos.  I would have made a terrible anarchist.    I have said some pretty weird things to the attendants - like the one time when I told them that radiation was less painful then having them park my car.  Chaos is unpredictable and dangerous.  I know that it reminds me of my illness.  My doctors are some of  the best in the country... and still what will happen next is not completely for me or them to control.  I have to find a way to live with the not knowing.  Which for me is about connecting with my breath in this moment, remembering all that I have that is wonderful, finding the opportunities, and letting go of the rest.  But it is something that challenges me and pisses me off.  

Today, they didn't even have a parking space for me.  So, the valet attendant offers me a free parking pass (although my parking is always free) and apologizes.  I think if I could have pulled the radiation from my breast and shot it through my eyes and into his heart... I might have.  I am going to be late for my eight minute appointment... I have to park forever away... I have to take a stupid van... Why the hell don't you reserve the spaces for patients in treatment... I am in pain... how am I going to reach for the parking permit when I can barely extend my arm... and I am fighting stupid cancer.  I didn't tell the attendant any of these things.  I just glared at him, sighed a heavy angry sigh, and drove to the parking garage.  On the bus, all of the cancer patients were unified in our disgust at the valet parking system.  Okay.  Now that I am writing it out here, it doesn't seem like such a big deal.  My anger feels so much more difficult to contain now that I am in constant pain from the radiation.  I guess I will throw away the complaint form I got at the concierge desk. 

So, tonight I thought I would make a silly image of my angry monster.  I gave myself a nice hair do and some radiation eyes.  It made me laugh, which has been needed this evening.  Valet parking is not worse than radiation.  Radiation is exhausting and painful.  My skin is red, irritated, tight, and throbbing.  The other thing about radiation is that it is every day.  Which means, every day I have to find room for cancer treatment in my schedule.  On the bright side, my radiation oncologist is wonderful... and I adore all of my radiation therapists.  They even listen to me gripe about my valet parking issues.  I also have to say that there is one valet attendant who greets me with a smile each day.  His happiness is genuine.  He tells me I am his favorite customer... and I joke that I doubt that very seriously.  But he makes me laugh and for that I appreciate him.   

Since I didn't post last week, I thought I would share my radiation mixed tape for the last two weeks!  These of course were the songs I heard each day while laying on the table.  My favorite memory was when the radiation therapists sang to me when Tears for Fears starting playing.  One said, "Shout, Shout, Let it all Out." and I said, "These are the things I can do without" and the second therapist sang "Come on, I'm talking to you... Come on."   Three more left... 

Week Five

Week Six

Have a wonderful weekend and thanks for visiting me.

Highs and Lows and lots of tears...

This has been quite the emotional week... so I thought perhaps I would give you short synopsis...

Monday

Monday I went to my main oncologist with my husband and my son.  I brought in my list of many questions -which my oncologist has become accustomed to at this point.  We talked about drinking coffee on tamoxifen, whether I can be in the newest  TDM1 trial (he said no, but I am going to try again),  and a bunch of other questions regarding life after treatment.  At one point, I said, "Since I have cancer..."  He put his hand on my knee and said, "Since you had cancer."  I cried and took a deep breath.  Yes.  I don't have cancer anymore.  I am cancer free.  Everything I am doing from this point forward is to insure that I continue to be cancer free.

Tuesday

I woke up with my hands not working correctly.  They had been aching for days - but now I could barely make a fist.  I tried to write something later in the day, and could not grip the pencil.  This too is an unwelcome side effect of chemotherapy.  Especially unwelcome because I am an artist, and art is my way of coping.  I  went online a little later and was attacked by the dreaded google monster.  He was hiding in a Her2support group site.  It talked about my poor prognosis.  I became extremely depressed.  Luckily, I went to my support group that evening and was able to share and cry and feel better.  The dark thoughts are intense.  Every worry is magnified and crazy making.  One of my online support group friends, Erin, likened the dark thoughts that swarm around your head to the flying monkeys from Oz.  I remember being terrified of those monkeys when I was little.  So terrified in fact, that it wasn't until a few years ago that I actually kept my eyes open and actually looked at them.  The Wizard of Oz is my daughter's favorite movie, so I began to look more closely at those monkeys.   I was surprised that they really weren't quite as scary as I had imagined (and I love their coats.)  Some of the dark thoughts I have are also not so scary when I look at them without fear clouding my vision.  I am not a statistic.  I am fighting.  And the dark thoughts are only powerful if I let fear control my vision.

Wednesday

I have a head ache.  It is intense and radiates from my eyes to behind my ears.  My vision also feels impaired.  I then get attacked by the google monster once more and have convinced myself that I have a brain tumor.  The type of cancer that I have seems to love to metastasize to the brain (I would share the google statistic that I found, but it is too scary for my family and friends).  I also found a small lump on the inside edge of my breast.  My husband tried to assure me that it felt like part of my tissue expander, but I really couldn't hear him through the incessant bad thoughts in my head.  After a good amount of fretting and crying, I took some medication and went to bed.  (Us cancer patients have all the best medications.)

Thursday

After radiation, I was directed to the waiting area so that I could see my radiologist.  It was super busy and there were lots of people waiting with me.  There is a special kinship among cancer patients.  Before long, we were comparing notes on doctors, laughing about our hair, sharing information about this study and that, and wishing each other well as each of us left the waiting area.  There was a beautiful woman who had come from the Philippines to get her treatment who loved the little hair I had.  For a while, I was the youngest one in the waiting area... but then things changed.  A young woman with breast cancer came and sat down with her husband... and then a young man came with his mother.  He had a brain tumor.  Myself and the younger woman comforted the young man who was possibly going to have to go through chemotherapy after radiation.   The young man was then called in to his examining room.  He shook all of our hands and I hoped for his full recovery.  I didn't share with him that I had been contemplating my own potential brain tumor.  All of the sudden, my fears seemed so silly.   My radiologist ensured me that I did not have a brain tumor, and that more than likely this was dehydration and more side effects from chemotherapy.  She felt the small lump in my chest and told me that it was part of my tissue expander (I guess I should have listened to my husband). So, with a big sigh of relief, I left continuing to feel cancer free.

Friday

When I was first diagnosed with cancer, I remember running into a good friend at Target.  I sobbed at the end of the hot wheels aisle as I told her about my upcoming treatments.  Within a week of telling her, my friend's mother began sending me cards.  They would come every other week - and sometimes weekly... but always just when I needed them.  They reminded me of my strength, and let me know that I was in her thoughts and prayers.  They meant so much to me, especially since she herself was battling stage 4 lung cancer.  About two months ago, the cards stopped coming.  I found out from her daughter that her life was nearing its end.  I was able to visit her one last time and sat on her bedside telling her how much those cards had meant to me.  She died a few weeks ago.  When her daughter asked me to read at the memorial service, I almost said no.  She wanted me to read the poem "What Cancer Cannot Do."  I envisioned myself as a big sobbing mess in front of everyone ruining everything.  I also knew I would regret it if I didn't do it.  My husband encouraged me to read the poem when I talked with him about saying no.  My friend said she would be fine with my tears.  So, I read over the poem 50 times and thought I was ready.  On Friday, I read it at the service and cried.  And even though I tried, I couldn't stop the tears.  I was sad that she was gone.  I was sad that her family was mourning.  I was sad that her grandson lost his grandmother.  I was sad because of my own battle with cancer.  And guess what, even though I cried and it was challenging, it ended up being okay.  It was a sad thing- and my tears were appropriate.  And I felt so lucky to have been a part of such a beautiful ceremony.

Saturday

We decided to celebrate Mother's Day today to avoid the crowds.  We took the kids to the aquarium and then out to lunch at a beautiful new restaurant that served lots of delicious organic and vegetarian options.  It was a wonderful day!  I sat at the table looking across at my husband and daughter, with my son leaning his little body against me and started to cry.  They were all so beautiful.  I want desperately to live to see my children fall in love.  I want to play with my grandchildren.  I want so much out of this life... but in that moment, I just felt happy and thankful.  Almost immediately, a woman sitting at a table next to us began to have a tantrum with her waitperson.  She then asked to speak with the manager and then the owner.  She complained about everything that she could think of.  Her anger was relentless.  Her mother and grandmother were both trying to calm her down in Russian, but she snapped at both of them.  Her small child was sitting next to her in his stroller.  I wanted to tell her what I had learned on this journey - that these things she was so angry about were trivial.  That she should feel so lucky to have four generations sitting at one table sharing a meal... but instead, we hurriedly paid our bill and left the restaurant   Before leaving, I told the owner that we had a lovely experience and thanked him.  I don't think the angry customer would have been open to my advice anyway.  Some things you have to learn for yourself... which is too bad. 

Sunday

My husband made me a delicious anti-cancer smoothie and we had a lazy day at home.  The highlight of the day was talking to my mom, sister, and dad over Skype.  I miss them all terribly.  This illness has helped me to understand how important it is to be near family - and I know I will make it happen one day.  But for now, I am thankful for Skype.  Of course, tears were shed.  I am so lucky to have their support, even though they are far away.  

So, I think I cried pretty much every day this week... but all in all, it was a good week.  I hope everyone had a wonderful Mother's Day!  Here is the "What Cancer Cannot Do" poem...

What Cancer Cannot Do.

It cannot cripple love

It cannot shatter hope

It cannot corrode faith

It cannot destroy peace

It cannot kill friendships

It cannot suppress memories

It cannot silence courage

It cannot invade the soul

It cannot steal eternal life

It cannot conquer the spirit

-anonymous

20/33 radiation treatments completed!  I am feeling much more pink and my chest is shiny from my intensive lotion regimen... 

but I am surviving.  

Slothra - The 300 Pound Sloth Monster

For those of you just joining me, I am wanting to spend some time drawing out some of the monsters that I have been cohabitating with as of late.  Mind you, I don't feel like this has been a happy arrangement.  I more often feel kidnapped by these monsters, but am trying to find ways to recognize these monsters' purpose and how I might hold power over them.  I wanted to post a monster mid week, but unfortunately, I was attacked by yet another monster.  This one has been attacking more frequently - especially since the beginning of radiation.  His name is Slothra - the 300 pound Sloth Monster.

I am extremely thankful for cancer treatments.  It is what is giving me the opportunity to continue living despite the large tumor that was found growing in my chest.  It is what I am hoping will allow me the privilege of seeing my children fall in love and become the people they are destined to be.  At the same time that cancer treatments are amazing, they are also painful, humiliating, depressing, anxiety provoking, and completely and utterly exhausting.  During radiation last week, I fell asleep and almost rolled off the table.  The waiting room is full of people with eyes half mast barely able to hold onto their People magazines.  This side effect is one of the more difficult ones for me.  Prior to cancer, I often had several jobs - I was a full time therapist working in the schools, I taught at two universities, I supervised an amazing group of interns, I made art and sold it online, and I still made time to be a mom and wife.  I was also in the middle of writing a book for kids about using coping strategies.  My plate was always full.  I didn't have time for television (with the exception of Project Runway).  I was too busy working and creating.

When I envisioned this monster, I thought of this enormous creature with its fuzzy arms wrapped around me hitching a ride.  Under his weight, it feels impossible to get anything done.  He isn't mean or scary... but he is debilitating.  Most nights, I just give up trying to coax him to leave me alone.  Instead I snuggle up next to him on the sofa and watch four hours of Iron Man movies. The house is a mess.  Laundry needs to be done.  I want to write that book.  But he wraps his weighty gigantic fuzzy arms around me and I feel paralyzed.  The fact is I need this monster.  If I didn't have him, I would continue to over work myself and not get the rest that I need for my cells to regenerate and heal.  But I also know that I need to find some way to strike a deal with Slothra.  Maybe in exchange for getting to bed before midnight, I can do art three nights out of every week.  Maybe for every hour of television I watch, I can clean for 20 minutes.  I have noticed that when I exercise, he tends to get bored and leaves me along for a while. It is just so hard to have the motivation to exercise when you have a 300 pound sloth monster on your back.

I have completed 15 out of 33 radiation sessions.  Aside from feeling exhausted, my skin is getting a little pink and the itching has increased.  My doctor's thought that my skin was looking very good- so I am encouraged.  I continue to be religious about skin care.  This is extremely important for me.  I have been someone who has not been very good about taking care of myself in the past.  If you want to survive cancer treatments, you have to be extremely good at self-care.  Taking medications and supplements on time, doing physical therapy exercises, drinking enough water, sleeping, and applying creams four times a day forces me to be an active part in my own healing.  This is one thing that I hope I don't forget after radiation.

Here are my songs for this week!  On Wednesday, the 80's station played "Girls Just want to have fun" just before they played, "Staying Alive."  The wonderful radiation technicians also heard the interesting song selections and when they came back in the room we all laughed.   I guess I do try to have as much fun as I can staying alive.  We all thought it was a positive sign.

Sending love and peace.

My Monsters

Second week of radiation treatments have been completed and thus far I seem to be faring well.  It is still too early to tell whether or not I will be one of the lucky ones and escape unscathed... but I am keeping my fingers crossed.  The side effects that I am noticing at this moment include some itchiness, internal tingling sensations, and exhaustion.

I am lucky in that I have an amazing online support group where we often share those things that people who aren't battling cancer can't understand.  This beautiful group of women remind each other constantly of how strong we all are and how stupid cancer is. When we are feeling anxious and scared, we lift each other with a chorus of "you got this" and know that we will get through it.  We share information We post pictures documenting hair growth and encouraging each other to go "topless" - which for the uninitiated, means without a hat or wig.  We share our fears, and feel relief to know that we aren't alone.  We discuss sassy comeback lines that we imagine using when people make rude comments about our hair or tell us about yet another person they know who died of breast cancer.  And we also laugh and find comedy in this frightening period in our lives.  I have said many a prayer for each of them and treasure their friendship.  It has been one of the biggest blessings that breast cancer has given me.  They are also incredibly witty and intelligent.  We are hoping to meet sometime later this year.  I know that as soon as I see them, I will be an emotional mess.   I can not imagine how alone I would have been without them.   Anyway....

The other day, I clicked on something I shouldn't have.  It was an article about breast cancer recurrence rates and subsequent survival.  I became paralyzed with fear.  The sad thing is that once I read one story, I begin searching around the internet looking for some story that will in some way disprove the last story I read... unfortunately, often it only leads to more terrifying stories.  The fear a cancer patient experiences can be intense.  My head was already pounding from not drinking enough water during radiation, and then I began crying, which triggered a rapid succession of hot flashes.  I posted about my fears and one of my survivor friends, Kelley, called it the "google monster"... and that was the impetus for this post.  I wanted to make art about some of the monsters that have been squatting in my psyche.  My hope is that if I know what they look like, what feeds them, and how best to tame them - then perhaps, I can control them and they will no longer control me.  At this point, I have named at least five little monsters.  I wanted to finish a few to share today... but only completed one.  (One of my monsters zaps all of my energy and leaves me completely lethargic, but you will hear more about that monster later).  So - I think that means this will be MONSTER week.... and what better place to begin than with Google Monster.

Google Monster

So, I have kind of explained the Google Monster already.  I heard an author once liken the internet to the sirens in Greek Mythology.  (I have searched everywhere for her name, but have come up empty.  If you know, please leave it in the comments section)  Sirens were enchanted creatures that would lure sailors to their death with their beautiful song.  In the story of the Odyssey, the sirens promised Odysseus comprehensive and absolute knowledge about everything on earth.  Sounds very much like the internet.  I can sit at my computer   to quickly check my e-mail and go on facebook, and before long I am lost at sea... searching for hours trying to find the perfect Vegan recipes to include on my pinterest board.  So, what I know about this monster is that it feeds on my hunger for knowledge.  When Odysseus was to face the sirens, the goddess Circe advised him to fill the ears of his men with beeswax.  Odysseus wanted to hear the song, so she told him to have his men tie him to the mast of the ship and not release him until they were out of danger.  He apparently begged to be released, but they refused.  In another myth, Jason (of Argonaut fame) brought Orpheus to help him traverse Siren infested waters.  When Orpheus heard the Siren's song, he immediately began to play  his lyre - a song so beautiful it drowned out the tempting voices of the sirens. So how do I metaphorically fill my ears with beeswax?  How do I tie myself to the mast of my ship?  How do I drown out the Siren's song?   I may not be able to stuff my ears with beeswax, but I can fill them with my children's laughter (which is one of the most beautiful sounds that I know of) or I can fill my ears with conversations with my husband - with the support of friends and family.   It is difficult because Sirens do not make up the entirety of the ocean.  So much of what I find on the internet is powerful and healing - such as my support group.  I just need to find ways to stay in safe waters.  It is said that once Odysseus heard the Siren's song and (with the help of some strong rope) resisted its call, the sirens  hurled themselves in the ocean and drowned.  This part of the story resonates with me.  I know that if I don't listen to the call of the Google Monster, the monster can not survive, just like the sirens.  Of course, writing this post made me think of my favorite This Mortal Coil song (Siren's Song)... which led me to find it on You Tube... and share it here (and when I finish this post, I think I will look up whatever happened to Elizabeth Frasier (the singer) on Google -see how great the internet is!)

Speaking of music, here are the songs I heard while lying on the radiation table this last week.  I have 10 down and 23 sessions to go!  I can't wait until the to go number is smaller than the down number.  The first week, I didn't really have to request any music because it was set to a good station.  The second week the radio was off.  I asked for an oldies station.  He gave me a station of big band music.  I have nothing against big band music, but I just kept seeing myself in some old musical with the radiologists dancing in unison as they dotted my chest to the trombone solo.  It was distracting.  The second day, I tried for sixties and seventies music.  It was an off day.  Lots of music that I really didn't like at all.  There is nothing worse than not being able to move and having some song you find excruciating playing in the background.  By Thursday, enough was enough.  I asked for a nice eighties station... and things went much better.  By Friday, there were so many great songs to choose from it was rather challenging.  I didn't choose this one (it has never been one of my favorites), but I did have a good time listening to "Another one bites the dust" and imagining my cancer cells blowing up to the beat.

Hopefully I will finish another monster and post it this week!  Thanks Kelley for the inspiration!  And thank you to everyone for checking in with me.   Feel free to leave me a comment so I know you are there.  Sending blessings.

Rads - Week One

So, I have completed my first week of radiation and thought I would share the process and how I am doing. Preparing for radiation was anxiety provoking to say the least, luckily actually being radiated is much less frightening thus far.

The process is relatively easy.  I check in and walk down the hall to turn into a second waiting area.  There is a dressing room there.  I go inside, disrobe from the waist up and put on a robe.  The biggest hassle thus far is making sure the robe I choose isn't defective - meaning some crazy person hasn't tied the ties into extremely passive aggressive slip knots that went through the hospital's laundry room without being detected. Once I am changed, I put my things in a locker and make my way to the waiting area.  There are magazines every where, a place to get some water, and a large table set up in the middle with two gigantic puzzles that the radiated community and their support people can work on.  I have no idea what the puzzles are.  I sit in the corner with my kindle and play Sudoku or check Facebook waiting to hear, "Ms. Acton."  Occasionally I will look around the room to see who else is unlucky enough to be there.  I have not seen anyone thus far who is younger than me.  This can be hard.  Sometimes the older patients will give me those sad puppy dog eyes which used to irritate me tremendously, until the day when I sat across from a twenty year old kid in the chemo infusion room, and realized that I was giving him the same look.   My third day in the waiting room, an elderly gentleman who had accompanied his wife caught me looking around.  We gave each other sad eyes and both looked away.

Once they call my name, I am taken into the radiation room.  I exchange pleasantries with all of the very nice radiation technicians, they untie my gown and I lay on what feels like an extremely narrow table.  Luckily those who have been through this before gave me the tip to always wear jeans with belt loops.  The arm on the affected side is bent at the elbow and placed above my head.  It is cradled by that special form fitting pillow that was made for me during my simulation.  I place my other arm at my side, with my finger through my belt loop.  This helps me from feeling like I am going to fall off the table and it gives me something to fidget with during the periods of radiation.  The technicians then go through a process of saying numbers out loud and moving the blankets underneath me so that I am in the exact perfect position.  A series of dotted lines are drawn down the middle of my chest and across the top of my chest with marker, usually purple.  Once the first position is ready, they place something on my stomach to monitor my breathing, and they leave the room.  A red light goes on in the corner and then a short beep followed by a longer beep.  The technicians re-enter the room and begin to move the machine into position for my next shot of radiation.  They leave and there are more beeps.  This happens a couple more times.  And then comes the final position, which is the most difficult.  The machine is fitted with a strange lens that points at my left breast coming from the right side.  The challenging thing is that the position is rather awkward, and often my right breast gets in the way.  Unlike a normal boob, these "foobs" as we call them affectionately, don't just move out of your way.  So it takes a lot of maneuvering on the part of the technicians in order to get the angle just right.  Once they do, the last radiation blast takes only seconds and I am done.  When the technicians return, I am able to move my arm down from above my head.  My arm is usually frozen as I am still recovering from surgery.  They help me to sit up and get dressed and I am able to go back to the dressing room.   Once in the dressing room, I use organic Morroccan Arjan oil to remove the marker from my body.  I then cover the radiated area with Miaderm and Aloe Vera gel - and sometimes I add some lanolin.  The entire visit takes less than half an hour from check in to check out.

On Thursdays, I meet with my radiation oncologist and her nurse practitioner.  There wasn't much to report on this first Thursday, since I just started, but this will be the place where they will watch for radiation burns and any other nasty side effects that might occur.  This Thursday, the doctor told me that after looking over my plan and my scans, she has decided to increase the number of radiation sessions.  She added three.  The overall amount of radiation will be the same, just the doses will be smaller.  She hopes that by doing this, she can protect my skin.  I cried.  I calmed down, thanked her for looking out for me, and then I cried some more.  The funny thing is that everyone kept assuming that I knew exactly when the last day of my radiation would be - but to be honest, I had never mapped it out on a calendar.  I think I am learning not to become attached to dates or outcomes... and even though I cried knowing that I  would have to come three extra times, I know I can do it.  It is just a hassle and I am tired of cancer.

My doctor promised that she would not be adding any more days, so I decided that I want to make a piece of art to count down the end of radiation.  I collect pieces of cardboard from boxes for myself and my children to paint on.  They are a cheap surface that is light weight and pretty forgiving.  One of the first signs that the radiation is impacting the skin is that you begin to turn pink.  As the radiation continues, the pink can become red and angry.  So, I decided to paint myself a nice cool blue.  I used hot glue to attach the small clothespin on the bottom of the board, the ribbon on the top, and the envelope on the back.  I am happy with the outcome.  I definitely noticed how hungry I was for making art.  I looked up from my piece and noticed it was 3:30 am!

You are able to choose the music that they play while you are being radiated, but I do not want any of my favorite music forever connected to radiation.  (I still have a hard time eating stir frys since chemotherapy.)  So, instead, I opt to listen to the oldies radio station that the radiation room always has playing.  I decided that I would share one song per day that I hear as I am laying on the table.  I am calling this section my "Radiation Mixed Tape."

Sending love! 

Healing Light

Iatrogenesis is when the nature of the medicine that is used to heal you can at the same time be the thing that causes you harm and even possibly death.  It is a scary notion, and one that cancer patients face from one procedure to the next.  The chemotherapy drugs are toxic to both cancer cells and those healthy cells in the body and can cause extreme adverse reactions such as secondary cancers, neuropathy, hair loss, nausea, infertility  and negative impacts on the brain. lungs, and heart.  Any type of surgery can be dangerous  Removal of the lymph nodes can put one at greater risk for lymphedema.  And then there is radiation.  

From the very beginning, I have been most frightened of radiation.   Wikpedia explains  that the "Radiation used for cancer treatment is called ionizing radiation because it forms ions in the cells of the tissues it passes through as it dislodges electrons from atoms.  This can kill cells or change genes so that the cells can not grow."  Changing genes and killing cells seems a bit frightening to me.  Do these machines know not to change my healthy cells?  What are my risks of getting secondary cancers?  What about the studies showing increases in heart disease in patients who have undergone radiation therapy?  Doctors generally answer these questions by stating that all of the research we have is based on much more primitive ways of using the technology.  Radiation has changed dramatically since "those" studies were done.  These are the responses that most all of my cancer sisters have received from their doctors in Canada to New York to California.  And although there isn't a lot of clarity around my chances of an iatrogenic response to radiation - my radiation oncologist was pretty clear that women with breast cancer who forego radiation have a 30% chance of recurrence.  Women who complete radiation reduce that to 10%.  And with that, I decided that I will undergo radiation.  I am scheduled for 30 rounds of radiation.  I will go every day, Monday - Friday, for a total of six weeks. 

After discussing my options, I was scheduled for my first appointment.  I have been working with a physical therapist so that I can move my arm above my head for the radiation to begin.  They had me lay on a table with my arm bent over my head where a special foam pillow was created so as to keep my arm in the correct position with each radiation appointment.  I was then given my tattoos.  Yes, permanent blue dots with a tattoo gun.  I am trying to think of them as warrior markings.  You can see in my picture above the small dot in the middle of my chest.  

My second appointment was the "dry run".  I laid down and they began situating the radiation lenses?  Not sure what those things are called.  They look like big cameras.  After drawing all over my chest with a marker, they took a couple of x-ray images to see where all of my organs are.  They also measured my breathing patterns.  Stanford utilizes a special computer-aided therapy that synchronizes radiation therapy with breathing patterns - so they are able to radiate when the heart is furthest from the chest wall.  

God willing, radiation is scheduled to begin tomorrow.  I have not been feeling very well all weekend, so I am a bit worried they may postpone.  I hope not.  I have been really working to prepare for this part of the journey.  One thing that I do when I am anxious, is I over prepare.  Here is a picture of the skin care products that I have purchased to help prevent and treat any radiation burns.  The pricey tube of miaderm was a present from my parents:-)

I have also been thinking about what I want to visualize as I lay on that table.  I decided that I wanted to see myself as a warrior... visualize the sun... and as I listen to the whirring and clicking of the machines ... see the cancer cells destroyed, and see me healthy.  

Room for expansion

I am finally seeing a light at the end of the zoladex tunnel- thank goodness.  It has been a hard couple of weeks.  On top of the emotional struggles, I greatly underestimated the exhaustion that I would encounter post surgery.  I have a short burst of energy in the morning - and by about one in the afternoon, I struggle to keep my eyes open.  By two, sleep has won.  I lay in my recliner and become completely paralyzed by exhaustion.  I open my eyes occasionally and remind myself that sleeping this much during the day will make going to bed in the evening difficult.  I quickly decide  I don't care, and go back to sleep.  I try not to nap more than two hours- but on some days, I sleep for well past five hours.  When I awake, I feel more zombie than human.  I am only motivated to watch television and explore the internet... art has felt like too much trouble.  I started a drawing a few days ago, but it has taken until tonight for me to complete it.  What is sad is that as I lay in bed immobilized, my brain is constantly in motion.  I imagine art constantly- the way I might depict my current level of anxiety, how I want to draw a picture of my son, the photographs that I have yet to take of this process, the interventions I want to utilize as I prepare for radiation ...  I know I will get to a place where I can create all of these images and at the same time, I have to be gentle with myself.  I don't move as fast as I used to.  That's not only okay- it could be a blessing.

When I am not sleeping, I am generally at random doctor's appointments.  My calendar looks like that of a socialite, only I am not meeting with anyone at the country club. Instead I am meeting with my oncologist, radiologist, physical therapist, or with the nurse practitioner who gives me my weekly fills.  In tonight's post, I thought I would focus on my fills.

So what are fills?  I had what is called a bilateral skin sparing, nipple sparing mastectomy with immediate reconstruction.  When all of the breast tissue has been removed from your body, they can't just give you an implant and say you are done.  They have to create a place for this implant to rest.  They do this with a thing called a tissue expander.  The expander is placed beneath the skin and chest muscle.  Each week, the nurse practitioner uses magnets to find the expander and inject saline into the expander until a nice pocket has been formed where later, the plastic surgeon will place the final permanent implant.  They can not inject all of the saline at once because the skin must stretch and I imagine the pain would be excruciating... so they inject little by little until you reach the desired size.    How much saline is injected will depend upon how large you want your breasts (within limits of course- you only have so much skin to work with).  Unfortunately, you can't say - "I would like a C cup, please fill me accordingly."  On every body frame, a C looks different.  For some women 550ccs of saline might look like an A cup- where as on another woman it could look like a D cup.  So, it is not an exact science.  If they overfill too much and you had a nipple sparing surgery, your nipples could start to drift to the sides of your chest.  Which I guess is not optimum, although with the exception of my husband, I don't plan on exposing my nipples to anyone.  Add to this the fact that I am going to begin radiation, and you have another confounding factor.  Radiation tends to shrink the radiated breast- so most surgeons over fill.  So in conclusion, I have no idea what my final chest will look like.  I am trusting my surgeons with my wishes and hoping for the best.  

My expansion fills are interesting appointments.  I lie on the table and she numbs the area, although it wouldn't matter much since I can't feel my chest.  She then finds the place where she will inject the saline. Apparently a magnet helps find the correct position. As the saline enters the expander, my breast begins to inflate.  I imagine how much I would have loved to have had such a contraption in high school, although I probably would have gone overboard.

Now, let me tell you about expanders.  They can have a whole host of problems- but even when things go swimmingly, they suck.  They are hard as rocks.  I feel like I am wearing a bra made of iron.  I try to pretend that I am Xena, warrior princess- and that this is just my armor... but most days they just make me feel super uncomfortable and sad.  They also tend to drift into my armpits.  I am working with my physical therapist on exercises to bring them back to the correct position, and my surgeons tell me that the final implant will not have this problem, but I have to say that I experience this as a major nuisance of unimaginable proportion.  One of my witty cancer sisters coined the term, "Pit tits"- which makes us all laugh but also allows for some normalcy in what feels all together wrong.  At times, I can't put my arms down to my side.  And on top of all of this, it hurts.  Your skin is expanding and is tight, your muscles ache, and those strange itches you can't scratch (because you have no feeling in your chest) continue to torment me.  I begin to understand why some women forego reconstruction all together.

So for now, I have been fully expanded.  After radiation, we will see if there has been much shrinkage- and if there has been, they will do an additional fill.  For my art project, I wanted to depict something about  this strange process of my ever evolving breasts.  I also wanted to poke fun at the absurdity of this part of my journey.  My daughter made me a lovely set of paper dolls a couple of weeks ago, so I thought - maybe that is what I  should do!  So here she is... with her breasts in various stages of expansion. I like her.  Not sure what I think about her breasts at this point... but she is a work in progress.  Just like I am.

Oh... and here is a picture of my daughter's beautiful paper dolls.  She made these as a present for me.  They came with dresses and wigs.   I am a pretty lucky mommy:-)