Archive for November 2013

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

 

Waking up without my breast. Pre-surgery thoughts.

I wonder what it will be like waking up without my breasts in two days

Will my first feelings be of sadness for my missing breasts or gratitude for my missing tumor?  Will I remember that I chose this path of a double mastectomy as the best option to keep living a life I love?  Will I recall that I made this decision to rid my body of the cancer now and save myself the anxiety of it coming back in my other breast?   I’m 44, will I remember that reconstruction and symmetry are important to me and this is the first step?   When I wake to a flat chest with only skin, nipples and plastic expanders, not yet filled, will I feel as if a limb is gone?  The doctor has said I may have phantom pain.  This is not internal surgery on an organ, but an external part of my womanly shape and identity.  Will I feel less feminine?  When I see the five drains that will empty the fluids from the wounds will I remind myself that the alternative is far worse?  When I reach to touch my breasts and they are numb and I realize that I will never again feel them being touched will I be angry I made this choice or grateful I had the option?

I’m trading my real breasts for my life – or perhaps just my sanity.  At least that is the bet I am waging.  Statistics show the same survival rate for women who have a lumpectomy as those who have a double mastectomy.  So maybe I’m just trading my breasts for some control.  I want to know that it won’t come back in my breasts.  I want certainty that I won’t go through chemo and surgery for cancer in my breasts again.  MRIs of both breasts looked suspicious and were hard to read, as my breast tissue is very dense, as is the case with many younger women.  So dense that a mammogram did not detect my cancer, even though I found the lump.  I don’t want the stress of retesting and having biopsies each time we find something uncertain.  I’m done with cancer in my breasts.   If it comes back elsewhere in my body… then it’s an entirely different game.  Once breast cancer metastasizes it is treatable but not curable.  So I’m treating this curable breast cancer as aggressively as it has grown in hopes that it ends here.

I wonder at what point I can declare myself cancer-free.  After surgery when the tumor is removed?  After all treatments, the radiation oncologist says.  But I want to begin thinking it after surgery.  I know there are cancer cells, too small to be detected by any advanced scanning, that are likely there.  The truly difficult part of cancer, for me, is keeping my mind from spinning into the ‘what if’ questions and staying focused on the ‘what is.’  Cancer treatments live in a world of studies, statistics and percentages.  I’m thankful for this, but my mind does better with the present.  ‘What is’ on Monday after surgery will be no more detectable cancer in my body.  I’ll write that in big letters and tape it on my fridge.  I’ll try to imprint it in my mind.  I’ll ask my friends to remind me when I am upset, hurting or anxious during the next 3 weeks of recovery and then 3 weeks of reconstruction where my breast implants are filled twice a week.  I’ll ask them to remind me again in about 9 months when I go through the final reconstruction surgery.  In 6-8 weeks, January 2014, when I begin 6-7 weeks of radiation everyday that makes me fatigued or burns my skin I may forget again.  Right now I want to think of radiation as the ‘bonus round,’ icing on the cake, to ensuring I get to keep this cancer-free outcome, but I may not remember this perspective.  Yes, let me complain at times, I’ll need that.  Don’t expect a superwoman, I’ll cry and feel my experience fully.  I’m not one to sugar coat what’s really happening.  But help me stay with the “what is” as I go through it.  Help me find the beauty in “no more detectable cancer” even before I’m finished with treatments.

Photo by Paige Stoyer of plastic surgeon Dr. Shannon O’Brien as part of her continued “The Real Thing” documentary series. See Plastic Surgery consult SHOOT for more.   Shot Week 16 of chemo, Oct 29, 2013

Pre-Op with plastic surgeon

Pre-Op with plastic surgeon

 

 

 

PRESS- Huffington Post 11/12/13

Huffington Post

11/12/13

The video and article is featured on the Huffington Post Good News section!

Huffington Post

Huffington Post

 

Week 16 – PRESS. Video!!

2 minute video profile on project.  Thank you Hooplaha.com and videographer Erik Schultz.  Filmed during the Hard Candy shoot with Raina Stinson.

Week 17 – End of Chemotherapy!

Week 17 – End of chemo.

It’s over.  This part anyhow.  Chemo officially ended after 16 weeks.  Four months of treatments every other week.  Most of that time feeling pretty crappy with 3 or 4 “good” days at the end of each treatment cycle.  In immediate retrospect, without the perspective of more time, I can tell you my ACT chemo, although I felt terrible at times, was doable.  If you had to, I image you could and would do it to and would find joy, too.  Time passes regardless of your circumstances, although sometime it seems to pass more slowly.  In my case, four months felt like a year.  However, I did arrive at that marker and now it’s done.  Four months and much has changed for me, but that’s it’s own story for another post.

There was a brief moment of celebration right after my last treatment where both my mom and birth mom were at my house with champagne.  A toast to the end of treatments before the side effects of the final treatment set in again.  A toast to my wonderful nurses at Providence Portland who made me smile, my oncology doc, Dr. Alison Conlin, and friends and family who got me though it.  There was also chocolate and flowers to make the day complete.  But whereas I thought I might have four weeks of celebration and a reprieve between chemo and the surgery that is scheduled for Nov. 18, 2013, I’ve found this time to be quite stressful.

Mom and birth mom.  Last day of chemo

Mom and birth mom. Last day of chemo

 

IMG_2386

Final chemo with sister

Physically, I am very fatigued.  Not just tired, but extremely fatigued.  Not the kind you can will yourself out of or fool with an extra cup of coffee.  I have the best of intentions to try get back into my photography studio and earn some money to pay for all these expenses, but my body forces me to rest.  I’m weak and I don’t want to be.  I can handle far less than four months ago.  I go in for a couple hours and do what I have to do then go home again.  To be expected, but not what I expected of myself, I suppose.  Most of the chemo side effects have passed with a few remaining and a few new ones that have started since my last treatment.  I’m officially done, but I’m not recovered.  Aside from the fatigue, I still have massive hot flashes every hour around the clock.  The throw your wig to the floor and start taking off your clothes kind.  These continue during the night where I wake up with the sheets and my body soaked.  I keep a towel in bed with me to dry off as I can.  There are too many to bother getting up and changing.  These are from the chemo-induced menopause.  We don’t know if this is a permanent change or not.  Oh yes, I’m still bald, although I’m growing blond duck fuzz now.  I’m afraid it will turn into feathers eventually.  It started right before my last treatment although I had heard it would take a month.  Determined hair!  I had to email my cousin Linda, who’s been through this, too, and ask her if the fuzz was actually hair or some kind of side effect.  It’s very weird stuff, but I’ll take it now.  Since my final treatment I’ve lost more eyelashes and eyebrows, though a few still hang tight.  I’ve developed neuropathy in my feet (my toes tingle without my being kissed) as well as a skin rash on my nose.  Both should go away, but doctors can’t say when.  Both of my big toenails also became infected and had to be cut away.  Now that was a fun day!  I wore Birkenstock with my toes wrapped in big bandages just like the Flintstones last week.

Emotionally, I’m not so much happy as simply relieved.  I’m relieved that I don’t have to go back in and make myself sick again.  I’m relieved that the bone pain has passed, that the nausea is mostly gone, that my mind is clearer, that my tumors are hopefully smaller.  I’m relieved that I got through it.

Emotionally, I feel quite fragile and anxious.  During chemo I had a purpose and had to push through.  Now I just have to wait and wait on something I don’t really want to do, but need to do.  More on this in the plastic surgery post.

I don’t know yet if chemo helped or not.  There is no MRI test (to meditate with the octopus from the Octopus shoot) for me.  There is no bone scan to see if it has spread, although the doctor assured me cancer doesn’t spread during chemo.  I would have liked to have known this while I was doing chemo.  I now just wait for the four weeks to pass between chemo and surgery where my breasts and lymph nodes will be removed.  Three days later the pathology report will tell us if the cancer was still there, if it shrank or if it disappeared.  It’s incredibly nerve wracking to wait, knowing there is still cancer in your body, wondering if could spread, while you heal enough to withstand the surgery.

Note:   I again feel the same pain in my breast that I had back in June that told me something was wrong.  I had this pain for two weeks before I found the lump and went to my doctor.  It went away during chemo and two weeks after we stopped chemo it’s now back.  I know they say chemo doesn’t hurt.  Mine does and thank goodness.  It is how I found my cancer when a mammogram could not.

11/16/13 Update After this blog post I contacted my oncologist and told her I was worried because the pain in my breast had returned as well as new pain in my armpit and arm.  She ordered an ultrasound.   Good news!  After 4 months of chemo was very positive.  It showed my tumor had shrunk by half.  (The tumor is fast growing and would have doubled without it)  The lymph node that tested positive during the original biopsy did not light up on this ultrasound.  The surgeon said the pain might be from the dead cancer cells being flushed from my system.   She also said we will still remove 3 lymph nodes, and I will need to wear an arm sleeve for one year to hopefully prevent lymphedema.   The pathology after the surgery will tell us exactly how much, if any, of the cancer was still in my left breast and if there was anything in the right breast.  Although, while it does not change my treatment plan it is a tremendous relief to know the chemo worked well.

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.

Self Portrait- Week 14 and 15

Weeks 14 and 15 of 16 total weeks of chemotherapy.   Week 14 was the week I felt the worst.  I was completely worn out with both my blood work and and spirit being at their lowest points.  I nearly did not make it into the studio to do the self portrait.   Week 15 was right after my final chemo treatment.  I did not feel well, but was relieved that it was over and there was only one more week of official side effects left to go.  No more chemo left to take.  Exhausted but relieved.

Self Portrait Week 14

Self Portrait Week 14

Self Portrait Week 15

Self Portrait Week 15

 

 

 

 

 

Week 16. Acupuncture SHOOT

Week 16. The Real Thing:  Acupuncture.  Shot Week 15

Since the beginning of chemotherapy I’ve been receiving weekly acupuncture through IEP (Immune Enhancement Program).  They offer low cost traditional medicine and have a special program for people with cancer.  I’ve also received Shiatsu (acupressure) and met with a naturopathic doctor there.  In all honesty, I have no idea if it helps. Chemo make you sick.  When you feel sick with new side effects all the time, how do you know if something has made you better or not?  I feel sick, I go to acupuncture and feel somewhat better and relaxed during the treatment then I go home and feel sick again.  I like thinking that I’m doing something proactive to help my body.  I like thinking that the herbs and supplements make me stronger and ready to take the next rounds so I can get rid of cancer.  In reality, I don’t know but I keep going.

Acupuncture for cancer

Acupuncture for cancer

 

Week 16. Chemo Recovery SHOOT

The Real Thing – Chemo Recovery.  Shot week 12

Photographer:  Paige Stoyer

These photos show my real world most days during chemotherapy.  The recovery period lasted most of the two-week cycle until the next treatment.  I want to be active, go to work, have my life back.  However, the flood of drugs in my body and brain say otherwise.  I do what I can and what I need to do.  I lay on my couch, tell my cat she’s cute, eat so I can take more pills.  Pills, pills, pills.  Every few hours,  I eat so I can take more pills. Anti-nausea pills, herbal pills, pills for pain, pills to sleep…  I turn all the lights on so my house is bright even when I am not.  I avoid the stacks of paperwork on my kitchen table: bills, applications, copies of blood work and appointments.  I worry about the papers and bills I’m avoiding, but can’t wrap my chemo brain around them. I sit up and turn on my laptop to connect to friends on Facebook or think about the next photo shoot.  On the days when I am not too dizzy or nauseated I go outside, ride my bike around the neighborhood, feel the air on my face.  I think about how the context for exercise, as well as most other things in my life, has changed.  How little accomplishments mean something now.  I try not to measure this time by the same standards I had a few months ago.

Chemo Recovery

Chemo Recovery