Archive for June 2014

Letting Go of my breasts. Letting Go Project Octavia Hunter

Letting Go Project (from 2/25/14) photos by Octavia Hunter

I try to remember that life is Right Now.  Not tomorrow, but this moment, this interaction, this person I’m talking with.  These photos show me letting go of my breasts.  I had them amputated and reconstructed as a result of breast cancer this year.  It is the day before my final reconstruction surgery.  The process was incredibly painful both physically and emotionally.  My brain had not yet rewired itself to accept these new breast as part of my body.  I felt phantom pain.  The expanders under the muscles for reconstruction were causing severe swelling (Lymphedema) in my left hand.  My normal life had basically come to a halt as a result.  On this day I was completely exhausted after 4 months of chemo and going into my 5th surgery of the year.  The process of being photographed while being asked what would it mean to me to let go of my old breasts was an important step.  These new breasts cannot feel touch, and yet they are beautiful and now forever mine.  I feel no less of a woman.  Holding on to them meant I was not living in the present, Right Now.  I let go of them that day and will need to remind myself of that often.  Please help Octavia take this project international.  Match my $25 donation or more through her Kickstarter drive.   www.kickstarter.com/projects/lettinggoportraits/letting-go-portraits  Watch video of session including Kimberli

Letting Go Project.  Octavia Hunter

Letting Go Project. Octavia Hunter

 

What chemo felt like in retrospect/My Uncle

This is a copy of an email I sent to my cousins last night.  My “uncle,” through my family of tangled branches (read story,)  has a cancerous brain tumor and has to be watched in the the hospital 24/7 as he tries to make a run for it every chance he gets.  He can not express himself right now, and I am trying to imagine what he might be experiencing without an ability to speak it.  Perhaps in writing this someone else going through chemo (mine was ACT for breast cancer) or their family member, will also have a glimpse inside what a treatment can feel like.

———-

Oh, I’m so sorry.  I hope that somewhere inside he knows this treatment is for his good.  Chemo and hospitals are brutal.  Necessary evils I wish we did not have to face.

The following is just my unsolicited response.  Ignore it if it doesn’t resonate with you.  I got so much advice I did not ask for or need this year I nearly puked.  People think they know your situation when they have no idea, and yet they still give it because they love us.  And so I will give mine because I love you.  Just throw mine out the window if it isn’t useful.  Still, I have thought about what your dad might be experiencing and tried to compare it to what I’ve been through to see if there is some compassionate understanding I might contribute to help you.  I don’t know if it will.

I know there are a millions different kinds  of chemo and his is certainly far different from mine.  I will share with you what I experienced in retrospect in hopes that maybe something is similar to what may be happening with him and that he can not articulate to you.   Maybe I can share what might be going on in his brain.   My chemo would hit me like a tank about 2 or 3 days after and I would be completely depleted for many days.  Chemo was unlike anything I had experience before.  I lost my ability to connect the dots quickly, it was like life was moving in slow motion.  I saw what was happening, but could not process it at the normal speed.  Perhaps that is happening in Uncle’s mind as well.  I remember feeling like I needed the world to be quite. Everyone just please speak softly or not at all.  Please stop moving, turn the lights down, don’t do that thing.  Shut the fuck up!!  Noise, motion, light were incredibly annoying, and I could not handle them. Chemo can make you crazy, and it’s a perfectly normal way to respond to your body being poisoned.  We can only handle it with an ounce of grace if we are aware.  One step over that awareness line and we are depending on instinct.  A hospital room would have been hell, with everyone coming and going all hours of the day for days on end, for me at that time.  If you had put me on chemo on top of that and then taken away my ability to speak clearly I would have made every attempt to escape.  I would have been so agitated you would have had to have 10 nurses on me.  I would have thought that everyone conspiring to keep me there had been abducted my aliens and that I needed to get out so I could save them.  They were clearly the crazy ones.  It would have been the truth from my standpoint at the time.

The steroids they gave me to lessen the nausea made me want to jump out of my skin at the same time the fatigue made me want to collapse into it.  It was like being in your worse state of anxiety and wanting to get up and run away from everything and everyone, while at the same time being unable to even expend enough energy to form a word or walk across the room.  It was incredibly frustrating, and every other second I felt one or the other impulse and sometimes at the same time.  I remember getting up and down off the couch over and over and going nowhere.  My mother could simply sit and watch me.  Occasionally I would yell at her for good measure.  It was something like being skinned alive, but on the emotional level.  However, I had the great fortune of cognitive recognition and believed that the chemo would/might help me.  I also trusted that there was enough time between each treatment to recover just enough so I could handle the next treatment, though I did not always feel that way.  He may not know this at all, in which case it feels like someone else is trying to kill him on top of the struggle he is already experiencing. So if there is a cognitive laps issue combined with the physiological one…   He may only recognize his body’s fight instinct (stay alive and stop letting them poison me) and unconscious flight response and not have access to the conscious analytical system that keeps that fight or flight response in check.  Without it his body and mind tell him to brake bail and make a run for it.  Even with it, you seriously wonder if it’s worth the effort.  Run, that would be the perfectly natural thing to do if you didn’t have the consciousness component working with you. I sure would have! Get me outta here!  I am shaking just writing this and remembering that sensation.  Of course, he wants to get away from it, the lights, the sounds, the hospital…. it feels like the poison it is and unless you can rationalize it why would you make yourself feel worse to feel better?  Any sane person would want to escape that.  I know you are doing everything you can to break through to him, rationalize and reassure him.  Maybe he is already there.  Or maybe he comes and goes.  I don’t know. Maybe share my story.  Tell him that I would have made that run for it with him, but Helen Brown told me to stay put and eat my zucchini cookies until I felt better and eventually I did.  I feel better now and have time to love my family and friends.

I will be in Seattle around July 15th for tests and would love to come see you all if you’re still there.  I want to tell him how much I love him.  How much being a part of his family has meant to me and my sense of belonging to the world. Please share this for now in the event we don’t have this time for whatever reason.  It’s important to say now.  Love to you, your family, mother and brother.

Put on red lipstick & cop a feel!

Tomorrow I will have my 5th & hopefully final surgery.  11 months with a little beast called breast cancer.  What can you do for me?  First, put on your red lipstick, the one my grandma said would make you feel better.  It does.  Then put your hands on your boobs and squeeze.  Go ahead, cop a good feel!  Guys, ask your wives and girlfriends to do it, too. Volunteer to help.  Promise to do a breast exam today.  You know your peaches better than the doctor who sees you once a year.  Better than the mammogram that didn’t see mine.  Invite your officemates and neighbors, call your sister and mom.  Everybody touch your boobies today!

PS – post your red lipstick smiles on my FB page as well!  I want to wake up knowing you did it.

 

Feel yourself up!

Feel yourself up!

The saga continues & writing will resume

I am currently going through all the writing I’ve done over the past six months of treatment.  I have to type (I could not type for a couple months due to lymphedema swelling my hand) everything and add the perspective of time, experience and new information to all of those journal entries and notes.  Although treatments have continued ongoing since the main surgery in November, I first was too exhausted to write then, in too much pain, then lymphedema, then more surgery, then a change of treatment entirely.  I’ve needed to focus on recovery and processing before I had enough energy and perspective to take what I’ve learned and hopefully make it constructive and useful for anyone else.  I will go back through the last six months and write openly and honestly about what has happened.  It may come out in small pieces and stories.  It may not be well organized in this blog.  Eventually the goal is to curate and edit everything into another website, a gallery show, perhaps a book and maybe even a talk.  For now, I’m writing and will begin posting. Tomorrow I have my 5th surgery in 11 months.  Hopefully it will be my final one, at least for now.  I feel good, I look better, I love my friends and family.  I am grateful for eyelashes and so many other things.