Pre-Op. Plastic Surgery SHOOT

11/16/13

My decision to have a bilateral mastectomy, as well as reconstruction at the same time, has been neither easy nor clear.  I have struggled with the surgical options available to me and what’s best in the big picture.  I have struggled with exactly when and what type of reconstruction to have.  Now, later, silicone, my own tissue?  I’ve discussed, read and had extra meetings with my surgeons.  I’ve weighed the pros and cons, cried the tears and wrestled with what I think is best for me long term versus what would be easier for me short term.  I’ve met other women making different choices:  bilateral mastectomy with no reconstruction, single mastectomy with reconstruction, lumpectomy…  We are all different.  I may write more on my options and decision making later.  Right now it’s a bit of a blur as I’ve made my decisions and need to move forward with them as I prepare for Monday.

Paige Stoyer photographed this pre-surgery consultation with my plastic surgeon Dr. Shannon O’Brien as part of her continued “The Real Thing” documentary series.  Shot Week 16 of chemo, Oct 29, 2013

Plastic Surgery Consultation
Plastic Surgery Consultation

 

Self Portrait Week 1 and 16, End of Chemo

Self Portraits

Week 1 and Week 16

These two portraits show the changes in my body between the first week and last week of chemo.   Clearly the hair is the most dramatic difference.  I was surprised my body did not change more.  I will continue to document the process weekly through surgery, reconstruction and radiation.

 

Self Portrait Wk 1 and 16
Self Portrait Wk 1 and 16

Week 16. Hard Candy SHOOT

Shot week 14

Hard Candy. Part of “Girls Just Wanna Have Fun” sessions by

Photographer:  Raina Stinson./ Henna Tattoo Artist: Ana Warren / Makeup Artist: Justine Verigin / 1st Assistant: Alan Thornton /  2nd Assistant:  Constance Spurling  Videographer: Erik Schultz for Hooplaha

Hard Candy, the concept that we can play with sugar and spice and all the nice, easy breezy aspects of life in a photo shoot when the other part of life, cancer, is so hard.  It’s the flip side of what I’m actually going through.  This beautiful, joyful, pink shoot full of sugar and laughter is a break, a release, a reprieve from chemotherapy and how difficult parts of life are right now.   It is really what this project is about.  Finding beauty in something that doesn’t always feel or look beautiful.  It’s why we need support in funding a book and gallery show to share the work with a wider audience and inspire others.  Donate here.    Continued below…

Hard Candy
Hard Candy

When photographer Raina Stinson approached me about doing a shoot for the Finding Beauty in Cancer project and told me about her series called, “Girls Just Wanna Have Fun,” I jumped on the opportunity.  I had recently purchased a piece of her work and wanted to meet her anyhow.  What perfect timing, I thought, and what a good opportunity to collaborate with her creative mind.  The session was both fun and exhausting.  It was shot the weekend before my last round of chemo.  I was as fatigued and low as I would be and had trouble sitting for the makeup and henna let alone the shoot.  I faked it until I was actually laughing and kept it going from there.  The team of creatives was amazing.  All of them helped me though, from keeping me supplied with water and snacks to putting my shoes on for me.  I was literally shaking from exhaustion after 4 hours, but happy to have done it.  Cancer is hard, and yet there are moments of pink, sugar and laughter in between.

Week 15 – Octopus shoot. Behind the Scenes

Week 16 – Octopus shoot Behind the Scenes.  Photographed Week 10

Behind the Scenes:  This was absolutely one of my favorite sessions, both because the artists involved were so fun, but also due to my attachment to the original concept.  I envisioned my meditation being physically created on the Oregon coast and was able to articulate it to the creatives.  They in turn ran with it and made it amazing.  First I called Matthew Mattison.  “Matthew, you don’t know me, but I know one of your clients.  He has an octopus tattoo.”  I proceeded to tell him about the Finding Beauty in Cancer project as well as the meditation, which was partially inspired by his tattoo.  “I’m in,” he said.  “You can have any Thursday, my day off.”  Amazing generosity and so much raw talent.  He literally took an ink pen and freehanded the “tattoo” onto me before painting it in with children’s face paints.  Next I contacted Becca Blevins as I knew her dynamic wedding photography and could see her creating something dramatic at the Oregon coast.  “Yes,” was her immediate answer.  Then I contacted Kirstie Wright, my favorite local make up artist, to add the finishing touches.  Perfect!  The four of us, along with my good friend and sometimes photo assistant, Leisl Stientjes, traveled to Manzanita and the home of my new friend and client, Susan Sanderson, where I was gracefully laid out on the kitchen table and painted.  As the afternoon light began to fade, Matthew and Kirstie applied the last of their color and we flew down the highway (wrapped in a shower curtain) toward Arcadia Park.  The sun was setting as we ran toward the low tide.

Octopus Shoot Behind the Scenes

Week 14 – Poem 7 by Ken Arnold

Poem 7 by Ken Arnold

They arrive, the chemo tears,

yours and mine,

summer rain in Autumn,

 

can’t stop them, don’t want them,

but oh for the release,

remembrance of those

 

days when tears meant

something, not this chemical

discharge, this effluent

 

waste, but when we were

ourselves, our bodies

overwhelmed by joy, by love,

 

what flew through us

hot sun and ocean,

another’s lovely body.

 

The tears recall us.

Let memory cleanse

the face of our return.

 

Because It’s Love, my new book of love poems, is now available from

Finishing Line Press:

https://finishinglinepress.com/product_info.php?cPath=4&products_id=1856

 

read a new poem every Monday at

www.kenarnoldwriter.com

 

and the long poem in progress, Chemo Brain, at

http://kenarnoldwriter.wordpress.com/

 

Week 14- The Real Thing SHOOT. Photographer Paige Stoyer

Week 14- The Real Thing.  By international documentary photographer Paige Stoyer during Week 11 treatment 6.

I feel these images are fitting this week.  I’m at my lowest point both mentally and physically and, whereas most of the shoots have been fun, fantasy-style sessions, this shoot was documentary style showing a real day of chemo.  I currently feel the way I look in these images.  Concerned, exhausted and unsure what the future holds or if I’m strong enough to keep moving forward into more treatments that make me feel terrible.  I only have 3 weeks of chemo left, and yet it seems impossible to see the end when I’m in pain right now.  The thought of upcoming surgery, reconstruction and radiation feels like more than I can handle. Paige’s images capture some real emotions from both her and my perspective and I’m grateful to her for showing us this side of ‘beauty’ within fear and sadness.  Kimberli

Paige_130924_5764

Writing & photography by Paige Stoyer. I was thrilled with the opportunity to work with my friend and fellow photographer Kimberli Ransom, to document the real day-to-day experience of her fight with breast cancer.

It is an act of trust to be allowed into these very real and difficult moments of her life and a show of her bravery to be willing to open up this way to the world.

I think we sometimes feel we have to protect people from the difficult stuff, the reality of battling cancer, of being sick.  We strive to put on a happy face for everyone, to show how tough we are.

But being strong doesn’t mean you don’t also feel vulnerable, scared and overwhelmed. The range of emotions that accompany a battle like this are staggering and unpredictable, changing from moment to moment.

I know this first hand from having walked this path with my mom during her battle with leukemia.  That has allowed me to have a connection with Kimberli about her journey, and though everyone experiences illness differently, to have at least some idea of what this is like for her.

Shooting this project has really taken me back to moments with my mom, being in the hospital with her for chemo and being in her house surrounded by the towering piles of medical paperwork that makes an already overwhelming situation even more daunting.

It is rewarding to know that while I will sometimes take a certain shot based on my own experiences, as we all do, when I show the image to Kimberli, it often resonates with her as well.  That’s why Kimberli’s project is so important, because so many cancer patients and survivors will be able to relate to her moments.

Like the feeling of walking down those many cold and sterile hallways on your way to your next treatment or appointment.

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I took the shot below because it reminded me of the feeling of being in the hospital for hours and days on end, where your life has largely come to a grinding halt and most things you do now revolve around this battle you are in.  Your world looks completely different now, but outside things go on as usual, the drumbeat of day-to-day life.  I distinctly remember during my Mom’s illness and before I went in for a surgery myself for a brain aneurysm a few years ago, looking out the window and feeling a disconnect from the world that was moving along outside.  Realizing that everyone else was going about their life as they always had, but you were inside this hospital, with everything riding on this surgery or this treatment.  We all go about our lives as if we are invincible and you just never know when your life will change in a moment.

The flip side to that is that when you come out the other side and are able to go on with your life, you will probably never take the day-to-day routine for granted in the same way again.

Paige_130924_5820

This photo is about the way you look at each treatment and the people who are caring for you.  You wonder will this drug do the trick, is this the one that is going help me win this war?  And how is it going to make me feel, what will my body do with this drug in it, will I have a bad reaction to it?  You look to treatments with such hope and dread all at the same time.

Paige_130924_5797

You develop special relationships with the people who administer the drugs and help you navigate the medical maze, and your doctors who see you week in and week out, because you literally are putting your life in their hands.

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Those shared moments of humor help you get through.

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This one speaks to me about Kimberli and who she is.  At the end of the day here she is looking right at us, showing us her both her strength and vulnerability and that she doesn’t intend to hide away but is facing this head on and asking us to come along on the journey with her.

Paige_130924_5862

As an artist I suppose there is a willingness and even a need, to explore these difficult and complicated aspects of our lives and our experiences, for Kimberli and I this is an opportunity to do this together.

 

I hope in our collaboration I am able to capture some moments that will help her to tell her story.

Paige_130924_5830Paige_130924_5847Paige_130924_5773

 

 

Week 13 – Answers to my earlier questions

It’s week 13, treatment 7, day 6.  I wanted to go back and try to answer some of the bigger questions I had early on.  I have 1 treatment and 3 weeks of chemo left.  I can see the end, yet the pain keeps me shortsighted.  Perspective shifts with pain I find.  It’s a gorgeous day, however, and on this Sunday I got to both the gym and the park on my bike.  If I don’t stop or look at my reflection I can almost forget I have cancer.  I feel very fatigued but somehow strong at the same time.

This is what I wrote originally.  See Week 6 – Chemotherapy side effects.  “The questions I had, and some I still have, that others may share:  What will chemo feel like?  What are the side effects?  Can I still work?  Will I be throwing up all the time?  Will I really lose my hair and when?  What is “chemo-brain”?  Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?  Will I have ‘moon face’?  What happens to my skin and nails? Will my old fibromyalgia re-emerge? Will the chemo kill me?  Will I wish I were dead instead of having it? Will it hurt?  What else might happen? Will I need help?  How much? Who will be there with me and who will not?”

Answers:

“What will chemo feel like?  It feels like a bomb hit me some days. It feels like something exploded in my body and can’t get out at times.  It alters both mind and body with symptoms and fog.  Other days it just feels like fatigue – operating my body at quarter energy.  My spirit and clear mind come back during these days and I live life intensely.  I’ve written much on chemo already so I’ll stop here.

What are the side effects?  You can read the original post and updates for more gory details but basically I’m on the 16 week ACT program for breast cancer.  I received treatment every two weeks.  The side effects during the first 4 treatments of my A/C where different than they are now during the last 4 treatments of T.  I can’t say which I prefer.  Maybe the latter.  They both suck.  I advise avoiding them completely, if you can.  With the first 4 treatments, the worst side effects were nausea, fatigue, some pain, chemo brain, mouth sores, hair loss…   In that order of severity.  For these past three T treatments the worst side effects are bone pain all over my body, hot flashes, fatigue and nausea.  I hear more neuropathy in my hands and feet, as well as excessive fatigue, will increase with this third treatment.  Yippee.

Can I still work?  Not really.  Very part time.  I still have to work some, 1) for my sanity and 2) because I am self-employed and my sole support.  No sick time, no disability insurance, no good to get sick my friend.  I have a mortgage and studio to pay for in addition to all the medical bills.  At first I tried to work most of the second week of chemo treatment but was completely overwhelmed by managing the details when I still had bad chemo brain.  After crying with four clients in a row I had to stop.  I now take one or two clients at the end of each two week treatment and focus all my energy on them and hope they buy a lot.  That’s it.  I don’t pressure myself to do more and I let it be.  Whatever income I create will be enough until I can work PT or FT again.  Now is not the time to work, although I feel the financial pressure.  I’m living on savings, and have rented a room in my home as well as part of my studio.  I’ll miss the holiday season, my busiest time of the year, which usually gets me though the winter.  I’ll ask those clients to come after the New Year when the surgery is complete and I just have radiation to manage.  Post holiday photographs will be the new thing this year.  Spread the word, it’s all the rage.

Will I be throwing up all the time?  No.  Anti-nausea drugs are amazing.  I’ve felt nauseous most of the time, but haven’t actually thrown up.  It is better for me now during the T treatments than with the AC.  This was one very welcome discovery!

Will I really lose my hair and when?  Yep.  Two weeks after my first treatment, like clockwork.  My head, legs, underarms and yes, pubic, hair all gone.  My eyebrows and lashes are barely holding on but I’ve heard that may be short lived with the T drug.  Damn it, I thought I was going to get away with them!  I “leak” now whenever the wind blows as there are so few lashes to stop the tears from overflowing.  I’m happy to have had them as long as I have.  Eyelashes are lovely.  They will grow back quickly, however.  I’m still pissed off that my brows are thinning.  If they go I’ll start a riot!  The bright side – I’m happy not to have to shave my legs and pits!  My head grows stubble, which I shave every two weeks because I like the feeling.  Nice!  I hear it starts growing in as soon as chemo ends and grows back at about ½ inch per month.  It’s going to be a while until it’s any sort of style, but I’m glad I wore it short for a week and liked how that looked. Can’t wait to get that sassy bob grown out!

What is chemo-brain?  This is still hard to describe.  It’s a fog.  It’s like my mind working in slow motion.  I can see the pieces, but I can’t put them together quickly.  It’s like slogging through mud to get to the answer.  I’ve found myself asking people to talk more slowly on the really bad days.  I make lists to remember things and then forget to read the lists.  Fortunately, this is not a side effect that is bad every day.  It’s usually just the first few days after treatment and then it lessens.  It is much less of a problem with the T portion of my treatment these last 3 sessions.  I’m sharper now but dulled by more pain.

 

Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?   The one you’ve been waiting for.  Well, the answer is I don’t really know. (Damn it! And only 3 weeks left to find out…) The 24-hour rendezvous man fell away the same week as my hair.  Pity, I liked him.  To my great surprise, others have emerged and I’ve even had 3 interesting dates with someone and put off the attention of others.  Who meets people to date during chemo?!  That’s nuts.  I even shocked myself.  It’s been good to rally my energy on a good day and enjoy company and dinner once in a while.  My heart and my mind are slow to focus on a new romantic love and prospective relationship right now, however.  Sex, for me, is connected to those things (usually, at least), and so while I’m sure the answer would have been ‘yes’ in the context of a relationship (the interest is still there on the good days), the truth is I just don’t know.  Nothing rallies the mind and body like romance and I love the prospect.  I’m so glad chemo is almost over!!

Will I have ‘moon face’?  No.  As far as I know this is caused by higher doses of steroid than what I was given.

What’s happens to my skin and nails?  I heard horror stories before.  My skin has become very dry, however, virgin coconut has been my favorite solution and cured the problem.  I slather it on after every shower and then wear a hula skirt.  I also really like CV Skinlabs and Violets are Blue products that are made specifically for cancer patients.  Very excited about both of them.  Overall my skin has done very well with a combination of these products and coconut oil.  Radiation will be it’s own story.  My sister says she has horse utter balm for me from the vet.  My nails have been fine (and yes, I’ve had them done and they are sexy).

Will my old fibromyalgia re-emerge?  No, thank god!  However, the pain from the Nulasta shot that stimulates bone marrow does cause me pain that is as intense and does migrate like fibromyalgia.  It’s bad and it, like fibromyalgia, is very difficult to tolerate.  While the doctors ask me if I ‘ache,’ this is definitely pain not an ache.  Maybe I have a different level of pain than most. Perhaps that is from having some form of fibromyalgia and nuerological pain issues still underlying everything.  I do not usually experience fibromyalgia pain or symptoms now due to new medication.  (Don’t even get me started on the idiotic argument that fibromyalgia may not be real.  Anyone who has lived with it will tell you exactly where to put that ill-informed opinion.  That can be filed with cancer cure diets consisting of pot and cantaloupe.  I received both.)  My chemo pain feels as bad as fibromyalgia, or the surprise may be that fibromyalgia feels as bad as chemo.  The good news is that the pain does lessen and almost goes away before the subsequent treatment.  I can deal with this.  The drugs I’ve tried do take the edge off, but do not take the pain away.  The pain has gotten worse with each treatment and this most recent #7 treatment has been very painful.  During the first part of chemo I thought that overall it was still easier than 7 years of intense fibromyalgia.  Now that the pain has started I find the two very similar, except I know it will go away once chemo ends, which makes chemo bearable.

Will the chemo kill me?  Will I wish I were dead instead of having it?   Although some days suck, chemo will not kill me, and I’m happy to be alive.  My blood work is being managed and, although I am vulnerable, I am not in danger of the side effects of chemo taking me out.  I can, however, imagine why people chose NOT to continue chemo sometimes.  It’s overwhelming, exhausting and feels very out of control.  Everyone in chemo makes their own choice.  Many people are in chemo not to “cure cancer,” but to manage terminal cancer.  I have a new understanding of what it means to choose not to have chemo.  Where the side effects make the quality of life worse than simply living without it.   I can imagine a time I would not want more.  For now, I’m happy to do it and finish.  It’s much better than the alternative, and I am fortunately enough to have the option.

Will it hurt?  What else might happen?  Yes, it hurts me, but not all of it.  Receiving chemo itself does not hurt.  Some of the side effects and the drug Nulasta do hurt.  Almost anything else might happen and does. I’ve seen others experience a wide variety of complications, but have been fortunate to have followed a fairly predictable path.

Will I need help?  How much? Yes, a lot some days.  None other days.  I need different amounts of help at different moments.  It’s so hard to predict.  From making food to making sure I take my millions of pills at specific hours.  When the side effects set in I want to do neither.  I like the comfort of having people around, and the company friends and family provide.

Who will be there with me and who will not?

To be written about later.

 

 

 

 

 

 

 

 

 

 

 

 

 

Week 12 – Medical Update

Week 12 medical update  I’m now more than half way through chemo and have had two treatments with the T part of the treatment Taxol.  My side effects have changed. While I still have the chemo brain and fatigue, I do not have as much nausea.  I require only one of the three nausea medications I did during the AC part. I’m no longer losing weight.  Note: contrary to popular belief, most people actually gain weight during ACT as the metabolism slows down like in menopause. I no longer have blurred vision and mouth sores.  The mouth sores became so bad at the end of the 4th AC treatment I needed antibiotics.  I have three new side effects with this drug.  Pain, hot flashes, neuropathy (numbness in hands and feet).   The pain is centered in my long bones, arms and legs, for the first several days, then lingers in my hands, hips and knees toward the end of the two week cycles.  I have pain medication that takes the edge off, but does not take it away. Sleeping is a problem due to the pain the first 5-7 nights.  Hot flashes started on the 2nd Taxol treatment and were every half hour for the first day.  A sneak peak at menopause!  I was happy being blissfully ignorant, thank you.  The neuropathy just started last night (week 12, 9 days into my 2nd Taxol treatment) when suddenly my toes began to tingle.  I’m worried about my fingers, as they happen to push a shutter button and play guitar strings and piano keys.  For some people it’s temporary and others permanent.  I meet with my oncologist next Tuesday before my 7th round of chemo and will ask her.  We’ll also discuss what’s next as I’m ALMOST DONE WITH CHEMO!!!  Just 2 treatments and 4.5 weeks left now. I’ll have 4 weeks of recovery then bilateral mastectomy surgery and reconstruction around November 18th.  Setting the surgery date has been more upsetting to me than I had imagined. My fears are around the physical pain not the emotional aspects.  Perhaps that will come later.  I want the cancer removed from my body now, but I’m afraid of the pain and fact that I don’t respond well to any type of pain medication.  Oh joy!

Thank you to all the people who came to my home over the past week and a half!  What a parade!  I so appreciate it!  My mom got sick with the flu and couldn’t come as she had been, for chemo week.  So in came my Portland family Pat, Katy and Dean Nida to the rescue – yippee family!!  I have the best girlfriends in the world!  Caroline Petrich, Becca Blevins, Wendy Weaver, Leisl Stientjes, Sarah Sharp, Machelle Brass, Whitney Pilsbury, Dennise Kowalczyk – thank you for the delicious food and visits!  Neighbors Joe Shoemaker and April Hansen thanks for your continued support and taking out my garbage!  Guy friends and fellow Portland Executives Association members, Dick Hartung (LCL Homes) and Casey Phillips (Phillips Electronics,) and Fred Graetzer (Standard Appliance): thanks for helping with my house this week.  When it rains it pours and the house needs fixing all of a sudden. Thank you to Shelley Cooper (Xenium Resources,) Patti Henry (Salon Shabumi) and the women of the Portland Executives Association who hosted a CABI clothing party in my honor and donated 50% of the commission to my medical fund.  You are really the best!