Christmas Eve with good friends and neighbors Joe and April. Grateful for friends, family, wigs & red lipstick.
Photos from 11/22/13, 4 days after a bilateral mastectomy with axillary node dissection, nipple sparing and the beginning of breast reconstruction.
This was not an easy shoot to do, physically or emotionally, but it was important to me. I wanted to document what my breasts actually looked like right after the surgery so I, and others who might go through the same surgery, would know. I did not know, at the time of this shoot, that I would need another surgery to get clear margins on the left breast. Fritz Liedtke and I agreed that he would be the photographer for this very important shoot. I felt that he would be both gentle and empathetic as I knew his work from an amazing book he created called Skeletons in the Closet, photographing and telling the stories of people with eating disorders. His work is hauntingly beautiful even within the context of struggle.
While it was difficult to look at my breasts for the first time, it was less traumatic than I anticipated. They looked familiar if not quiet mine. I was happy to see my nipples, which sometimes cannot be spared. I could see and certainly feel the expanders under my chest muscles that formed a new temporary shape. My muscles still spasm around them throughout the day, and you can see a spasm happening in one of the images. Really not fun, but they will pass. I elected for reconstruction to begin at the same time as my bilateral mastectomy, and thus I had the option of keeping my nipples. Had I waited until after radiation this would not have been possible. Immediate reconstruction made for a more difficult surgery and recovery, especially after chemotherapy, but was important for my mental health, I think.
I’m still recovering, a month later, but I’m happy I chose this path of doing it all at once. There are other options that work better for other people. This is just what I wanted and was able to do. Sometimes there’s no choice in the matter. The remainder of reconstruction consists of having the expanders filled up with saline once a week until I’m the size I want, or I have to begin radiation. There is also another surgery to replace the plastic expanders with softer gels, but that will not happen for 6-12 months after radiation. The breast tissue may need to be reshaped some at that time, or another surgery, as far as I understand. I’m not clear on all of the details that far ahead. I’m learning to let go of needing to know. There is no longer a tumor in my breast or lymph nodes. That is the most important thing.
OPERATION ROOM PHOTOS Paige Stoyer photographed the surgery in the operation room. This is highly unusual and took several levels of permission.
I do NOT recommend seeing these images before you have surgery unless you feel a strong need to. Personally, I would not have wanted to see graphic images beforehand.
If you are interested (note they are very graphic) click link and enter password “surgery” http://wp.me/p3Limh-iU
Time passes, though sometimes more slowly. November 18, 2013, my surgery date, was nearly 5 months from the day I learned I had breast cancer, June 25, 2013. The original shock and fear gave way to acceptance and a project to focus on finding beauty in life despite and within the hard days to come. Tests, waiting, chemotherapy, side effects. There were many hard days and the time dragged on. During the month between my final chemo treatment and surgery day, many difficult decisions about what kind of surgery, reconstruction and then when to begin reconstructive surgery had to be made. In the end, I decided on a bilateral mastectomy with left axillary node dissection. I didn’t want to ever do this again. I also chose reconstruction to start at the same time which made it became a more major surgery as tissue expanders were placed under the chest wall muscle.
OPERATION ROOM PHOTOS We received special permission for Paige Stoyer to photograph my surgery in the operation room. If you are interested (note they are very graphic) click link and enter password “surgery” http://wp.me/p3Limh-iU
Images below include the lovely nurse at St. Vincent’s Hospital preparing me for surgery, as well as the anesthesiologist who called me the night prior to surgery to review my drugs and assure me I would be sound asleep and not feel a thing until later. I liked how the surgeon, Tammy De Le Melena, wrote “Yes” in my left breast. I felt scared but very comfortable with my surgeons and glad to have my family close. I also was ready to have the tumor and lymph nodes out so I could stop worrying.
Below are images with my mother, Helen Brown in the brown jacket. The second image is with my sister, Paula Johnson, watching me put on my red lipstick for surgery. In the background are my friends Lisa Helderop and Laura Klink. The last image is with my birthmother Pat Nida.
I waved “Goodbye tumor” as they wheeled me away. I remember being in the operating room where the operating room nurse had me sit up and threaded a pain pump into my back. I remember him holding me tightly and wondering why. The next thing I knew I was breathing deeply, the nurses were saying good job and I said “I’m having trouble breathing.” Then I was out.
I don’t remember being in the recovery room except for thinking, “I’m glad the tumor is gone.” I’m told my lipstick stayed perfectly intact. I do remember being wheeled into my hospital room and the man pushing my gurney had trouble lowering it to my bed height. The jostling was hurting me and I remember looking directly at him and saying, “Stop that. I’ll walk.” The friends and family who had waited during the 5-hour surgery and 2-hour recovery came into the room to say goodnight. I was happy to see them all. I was also hungry and pretty loopy from the anesthesia and pain meds. A tall dark and handsome doctor walked into the room and I told him he was cute and could stay. I spent one night in the hospital as that is what insurance covers and all I wanted to stay. I got very little sleep with two nurses named Sarah coming into my room all night. I was near the elevators and it was noisy. I wanted to be in my own bed. I wasn’t released until about 5pm the next day once the plastic surgeon, Dr. Shannon O’Brien, came was sure my pain was under control. She loosened the wide ace bandage, which felt like it was strangling me and peeked underneath. I looked with her and saw that I still had my nipples. Oh happy day! The nurses told my older sister and mother how to care for me and empty and measure the five drainage tubes that hung from my sides.
It never occurred to me that I would be told one week later, at the post-op appointment, that I would need another surgery the following week. The pathology results were good (I’ll share the specifics later), but there was not enough margin taken around the tumor due to the location. I’ll write another post about the 2nd surgery as well as how I felt physically and emotionally during the month that followed soon. I’m still recovering, experiencing bad chest spasms from the expanders, taking 1/4 of my pain and full spasm meds. I cannot drive or work yet. I’ve also started to develop lymphedema in my left hand. This one really shocked and upset me. I’m frightened of it. The insensitive physical therapist who evaluated me today and told me my lymphedema is permanent complained that HER job was difficult because she had to tell people that. Instead of repeating that it’s permanent, it would have been much more useful to hear how I could deal with it. I would have liked her to talk about how I am going to manage it. How at just stage one others have been able to reverse or prevent progression. Instead I was left feeling rather hopeless and cried my way home afterward.
I thought the weight of just having the cancer removed would make everything easier. It has but the recovery process is much more difficult than I expected. Tomorrow I begin the inflation of my breast expanders that were placed under the chest muscles during surgery and will continue once a week until I start radiation. Radiation doesn’t have to start until early Febrary now, which means I can do the expansion more slowly than twice a week. (My radiation oncologist reviewed the surgery pathology and now says I can begin radiation 10-12 weeks after the first surgery. Originally it was estimated I would only have 6-7 weeks.) I will also now have PT twice a week for the next several weeks. I may try to find a new physical therapy groupo but the holidays are coming and I need treatment now. Just like before each chemo treatment, I do not feel ready for the expansion tomorrow. I don’t feel strong enough, recovered enough. And yet, it is the next step (which we delayed last week due to the second surgery) and needs to happen. So I step forward.
Update: I had my first breast expansion today with Dr. O’Brien. The “fill up” as I say or “top off” as my friend Laura calls it was interesting to watch. Saline was pumped into my breasts (there is a port beneath the skin that the doctor simply put the needle through) and, what do you know, my breasts got a little bigger. I have small bumps now. I even have a nipple that feels something. Amazing! She said this will help my chest spasms go away as it’s likely the folds in the expanders that are causing them. I will have Paige take photos of the “fill up” at some point so others can see what it looks like, too. It was only a bit painful when the needle entered. Also, I contacted another physical therapist, asked Dr. O’Brien, and met with the lymphedema garment specialist. All said that stage one lymphedema, like what is in my hand, can be reversed. Okay, let’s go with that and do whatever I need to do.
November 16, 2013 Two days prior to surgery I gathered together some of the girlfriends who had supported me during 4 months of chemo and recovery. My friend Ron Gladney, the manager at The Benson Hotel, upgraded us to The Presidential Suite where I piled all the gals together on the same bed where Obama slept for a group photo full of red lipstick. Photos by Paige Stoyer as part of The Real Thing series.
To celebrate the end of chemotherapy and prepare myself for surgery, I decided to throw a little party and invite only a small group of girlfriends. Please don’t be hurt if I missed you or you are of the boy variety. I know I missed some. I wanted to keep it small and I was still VERY tired from chemo. While there were so many friends and family members who sent well wishes or offered support, all of which were greatly appreciated, there were some that really stood out. Those were the ones who showed up at my house over and over again. They came over, kept me company and did the work even when I couldn’t articulate what I needed, when or how. Read more on what they did and what it meant at the end of the post.
The photos below are images of just getting ready for the party. Simple, and yet I was still very fatigued from the chemo. This was my first real outing after a month of recovery. Mostly hairless and tired, my original breasts out on the town for their final party. My little sister, Katy, in my blond wig I would throw off during the evening due to the hot flashes that still plague me every hour. My eye liner painted on thick before my fake eye lashes, which I never cared enough to learn how to apply myself, arrived with Lily, who’s a makeup artist. The 8 bangles that hung from my wrist for each week of chemo awaiting the new addition of rhinestone ones for surgery. My hands on my breasts as I realize I will come out of surgery without feeling in them.
Women, yes women. I found it was primarily the women in my life, although not exclusively, who helped me the most to get through chemo. Some were fairly new to my life and I was as surprised by that as I was by the absence of a few people I thought would be there, but could not for whatever reason. I know, I’m lucky, I have a lot of support. However, the 4 months of chemotherapy and recovery was quite a lonely time despite this. Every other week, once my mom or older sister would go home, I was still ill and then alone in my house. It was hard to reach out to others and articulate what I needed even if they asked. That’s why this group of women, as well as a few not pictured here, were so outstanding, each in their own ways. I also kept the big stack of cards, Facebook messages and phone messages, even those relayed via family members, on the coffee table. They were wonderful and helpful, I loved looking at them, but when I was in the fog of chemo side effects it was people showing up in person and quietly staying with me that really made a difference. While others may need space when they are ill, I found I needed people with me, not just for short visits, but for hours of quiet time. I’m sure I wasn’t good at expressing that however.
A few examples of what these friends did that made such a difference Some women came to medical or chemo appointments, Janis Picker, Claire Bard, sister Katy Nida, and others not pictured, Amy Bradshaw, Linda Alper, birthmother Pat Nida and sister Paula Johnson and mother Helen Brown. I needed someone there to help me process and remember. There were so many doctors and so many details! Some like Leisl Stientjes and Sarah Sharp spent the night, picked up prescriptions, ran errands, washed dishes, vacuumed, gave hugs and cried with me. Some of the women, like Caroline Petrich, made soup every single week. Simple, consistent, helpful. Some, like Wendy Weaver and Whitney Pillsbury, brought delicious food and sent messages nearly every week. Some just sat with me while I ate, making sure I took my medication. Far too many meds for me to manage on my own some days. Paige Stoyer not only documented chemo and doctor appointments with her photography, but listened and helped me process what I was hearing. Lisa Helderop reminded me “it will get better,” which were words she had repeated often at another difficult time in my life. This helped me focus on the fact that all things change and indeed, this time, too, would get better. Neighbor April Hansen shared tears and groceries. Becca Blevins rented space in my studio to help cover a bit of my overhead, photographed the Octopus shoot and quickly became a close friend. Four of my oldest and closest girlfriends, Melissa Shields, Mo Sami, Helena Echberg and Anne-Marie Notaras live in other cities. They called and came to stay with me when and if they could and this mattered tremendously. My home was often filled with flowers from Lily Hutchins of Flowers in Flight sometimes via our mutual business friend, John Middleton, who once left a bouquet that read, “Love you. Fuck cancer,” and came to my house for the day once to “fix shit,” like painting my fence.
What we learned. During that evening, Becca asked everyone to sit in a large circle. Each woman then made a toast to me and some expressed what being there for someone with cancer meant to them. Some of them were surprised to be included in this small group, as if what they had done was not enough. However, what they did seemed huge to me. Some articulated that it was an honor to be let into the process of me going through cancer. I had no idea. They said it made them see that they too could do it if they got breast cancer. Others confessed early doubt as to whether or not I needed them, as Facebook made it appear I had it all together. I certainly did need them. I’m so glad they reached out despite their own fears. There were fears about getting cancer themselves, not from me of course, but how just being around someone who has cancer makes us think about our own vulnerability. Many of the women have had friends or relatives die from cancer. What if I died? Would it be that much more painful to be close to someone then? I have that in my own family and wondered how I would be if any of these women had cancer. They expressed fears that they didn’t know the right things to say and were uncomfortable at times. I said I felt the same way and didn’t know what I would have said to them either. “We all are stumbling around trying to hold one another up,” as my grandmother once said. Yet they showed up again and again. They put aside some of their own needs, busy lives, families and extended their time and love to make room to care for me in their own ways. They did not take it personally when I did not respond or was too fuzzy with chemo brain or fatigue to tell them what I needed. They gave me the benefit of the doubt and did what they thought would help. They, like so many others who showed up, did help and I am grateful.
I realized that night that I have learned to receive love and help more openly now. To let others make a contribution not only because it helped me but because it helped them. They wanted to support me in my cancer journey, weren’t always sure how, but tried anyway. They taught me. The next time someone I love, or want to love, has cancer, I hope I show up and keep showing up for them just like these women have for me.
REQUEST: If any of the women who were there that night want to make comments on your own experience of being there for me during cancer I would love that. Or others just reading who might want to share their thoughts. This seems like a topic that could really benefit readers supporting their friends and family who are going through chemo.
I’m behind on posting to the blog as I’m still recovering from surgery. I have 3 shoots yet to post, two by Paige Stoyer documenting both the “Girlfriends’ End-O-Chemo Party” and the “Surgery,” as well as my stories of recovery and then Fritz Liedtke’s amazing shoot of my chest 4 days post surgery. I am 3 weeks beyond the bilateral mastectomy now and 2 weeks beyond a second unexpected surgery and want to post a medical update. So 1 week after the original bilateral mastectomy I learned that the surgeon did not get a clean margin around the tumor due to it’s location very low on my breast. This was not a mistake she made, but something she simply could not know until the pathology came back. The 2nd surgery was 1 week later (with Thanksgiving week between) and was an outpatient procedure and not nearly as invasive as the first. It was, however, stressful, as it didn’t occur to me I might need a second surgery and there might still be cancer left in my body after such a radical first surgery. It’s also set me back on the healing process and when and if I would be able to drive or work in December. I still don’t know. A small price to pay for piece of mind, however. I just got the pathology back. Everything was clean this time! In other words, the bilateral mastectomy and left axillary node dissection removed all of the detectable cancer.
I also learned that the 4 months of chemo was effective. The tumor was less than 1/2 it’s original 4cm size. (6/13/14 update: I later learned that this is incorrect. The chemo did not shrink the tumor at all. It was not 4cm but 1.8-2.0cm both prior to chemo and when it was removed. ACT chemo is not usually very effective with ER+ breast cancer. I did not know this.) Cancer was found in 2 of the 8 lymph nodes (6/13/14 update: it was actually 7) removed on the left side and the chemo had also shrunk those. (I am not longer sure this is the case here either. The tumor in the node was nearly 1cm.) All good news as it means that, hopefully, the chemo also took care of any renegade cells floating around my body. I think, anyhow. I will still need drugs for the next 5 years or more to help prevent a recurrence. What’s next? The plastic surgeon placed expanders under my chest wall during the bilateral mastectomy. I need “fill ups,” where saline is pumped into the expanders to stretch the tissue to create new breasts, over the next 3-4 weeks before radiation begins. I was not recovered enough this week to start that process as planned. The second surgery went in through the same incision and it’s not healed yet after just one week. When you see the photos from surgery, if you choose to look at those (they will be password protected so you don’t accidentally see them if you don’t want to. They are very graphic), you’ll understand what a major surgery this was and how traumatized that area is. I do still have to have 6-7 weeks of radiation every day, as there was cancer found in 2 lymph nodes they removed. That starts 6-8 weeks after the first surgery, I think. Or maybe after the 2nd surgery? It’s all a bit confusing right now. I have to wait for the radiation oncologist to look at everything to give me the final date and then the reconstruction plastic surgeon has to work within that time frame to “fill me up” twice a week to whatever point my new breasts will be. I have to stop regardless of whether or not I am my previous D cup when I need to start radiation. This is not a case of choose your ideal Victoria Secret size. It’s more a matter of doing what we can with the constraints of the time we have and how I do with the pain.
Bad news- I have no idea what my health care will be on January 1st as my plan is ending. I just contacted Cover Oregon and they have no record of my insurance broker submitting my application, which I did several weeks ago, or of me even being on his client list. The woman told me I was now past the deadline to be covered for Jan. 1, 2014 but that maybe the broker could get me something temporary until I could get coverage on Feb. 1. To my understanding that would mean I would have yet another deductible to pay out of pocket for radiation during January that would not apply toward my new plan on Feb. 1, 2014. This could be up to $5000 I would then have to start paying toward again in Feb. I have a call into my broker now and have even contacted a second broker as this is very concerning! I wonder how many other people with cancer have this additional stress right now. Yikes!
Photography by Paige Stoyer. Part of her Real Thing series following my treatment. Photographed on Nov. 14, 2013. 4 days prior to surgery. Post written Dec. 9, 2013
I love my photography studio. I love the grain of the wood on the floors, the brick walls, the four huge windows that flood the room with morning light. I love the old storage building that hosts 25 studios including mine, full of creative people, a leaky roof and a red freight elevator. I love that the dogs who come to work with their owners always run up the stairwell and into my studio, the first one, during the summer when the doors are flung wide open to let in the draft cool flow through the space. My work as a photographer, my 800 sq ft studio and the variety of who and what I get to photograph each week center me, ground me, make me feel connected to the community and myself. It’s difficult to remove myself from my studio and work while I focus on healing. Although I did work some during chemotherapy, maybe 1 or 2 clients at the end of every two week cycle, I was not in my studio on a regular basis. I was simply not strong enough to work except on the very last few days of each cycle when the chemo side effects would fade. It was almost impossible to predict when I would feel strong enough for clients and the few I did work with were really generous in working around my fatigue and occasional rescheduling. I have not worked since this photo shoot over 3 weeks ago while I’ve been recovering from surgery.
This photo shoot was done during the one week I did work a full week. I had 4 weeks to heal between my final chemo treatment before my surgery. I needed all 4 weeks, but by the last one I decided I also needed the sanity of my being in my studio and absolutely had to make some money. I put on my lipstick, called back clients who had been waiting for me and put out my welcome mat. This particular shoot was for Flowers in Flight, an amazing floral shop in downtown Portland. I am fortunate enough to be doing their product photography for a brand new website and for 4 days my studio was full of fresh floral designs each morning. I would shoot and edit, then Lily Hutchins would select her favorites, bring in a new cart full of designs and take back the previously photographed ones. Over the past 8 years in business I have really become more of a portrait than product photographer. However, I love product as well and was so grateful to photograph flowers that stood still, took minimal lighting and did not need entertaining. Children and families, although great fun and wonderfully distracting (no time to think of yourself) are much more difficult to photograph than flowers. Paige Stoyer followed me during one of these days.
Finances: The following images show the other side of being self-employed and single during cancer. While I have the ability to be flexible with my schedule there is no back up. No disability pay or insurance. No one to be me when I can’t work. As a family photographer I make 1/2 of my income around the holiday season. I’ve missed all of it this year and wonder what will get me through the slow months of winter and early spring. My bookkeeper, Marian Lucas, happened to drop in to pick up the bills during the floral product shoot and Paige captured the thoughts written on my face. Marian now does not only my studio bookkeeping, but also my home and medica,l which is a nightmare to organize and track as anyone going through major medical treatment knows. I am fortunate to have had health insurance at the time of my diagnosis. The bills currently come to over $100,000 and I’m not finished. My out of pocket for this year is $5000. My insurance will go away in 21 days, at the end of the year, and I still have no idea what my next coverage, some type of ObamaCare, will be as the website is down and it’s taking up to 45 days to process written applications. The stress of seeing both my studio accounting as well as my medical bills shows in these images. I feel like I’m always 2 seconds from tears when it comes to finances right now. However, my first thought always has to be on healing. I can only do so much to bring in money right now and it will somehow work itself out once I am working full-time again. I try to believe this and repeat it to myself often. I’m grateful I took the advice of money people and had backup savings to live on for a few months. I’ve needed it all.
The end of the day. I’m tired, worried, happy, content…. So many things in one face and two photos. It has now been three weeks since I’ve been able to work in my studio (I’m post surgery as I write this) and I miss my wood floors, brick walls and morning light. It will be another few weeks before I am able to lift anything in order to work and move my lights around, although I hope to call on couple of friends to assist with some product work before then. I needed a second surgery, which I will write about later, that has delayed my healing process some. I don’t know how the reconstruction “inflation,” which begins tomorrow, or the radiation, which begins in January, will effect my ability to work. I’m hopeful physical therapy, good food and some more rest will have me back in the studio playing and making a living again before too long.