Sunday, April 28, 2013

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.

Sunday, April 21, 2013

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! 

Monday, April 15, 2013

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.  

Friday, April 5, 2013

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:-)