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.
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.
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.
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.
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.
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…
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.