Thank you for the emails and messages since the surgery and the Oregonian’s article came out. I am 2 weeks past surgery now, but still recovering and have needed far more help than I anticipated. My older sister and mother have cared for me 24/7, and I am just beginning to do things for myself again though I can’t drive and still have drainage tubes in my sides. I am not really writing much at the moment. Sleeping, eating and taking pain pills is more my regiment.
Paige Stoyer photographed the pre-surgery chemo-girlfriends party at the Benson Hotel and was actually in the surgery room during the double mastectomy and reconstruction. I have not yet seen these images and will wait to view them until my next week. I will also share photos from the shoot four days post surgery with Fritz Liedtke, as well as the self portraits from after surgery once I’m recovered from the next surgery I’ll explain next.
The post-op appointment with my plastic surgeon went well. No problems. I’m healing well. Evidently my nipples look good on the outside as well as the outside and they were able to save them during surgery. This was very good news to me as I woke up looking somewhat more normal than I expected. The post-op appointment with my surgeon, however, was not quiet so good. Due to the location of the tumor, even though it was much smaller than before chemo and there was only cancer in 2 of the 8 lymph nodes removed, I need additional surgery this coming Weds to create a wider margin around where the tumor used to be. This is just to be sure we got everything. So there’s little time or energy to process where I’m at now before I have more surgery. I will wait until then to begin posting. Thank you for your thoughts and support. The outlook is very good and my hair is growing in the meantime!
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.
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.
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.
I asked photographer Bill Purcell and makeup artist Lily Hutchins to collaborate on a session and left the concept completely open. Via email they both began down this path of the emotions of cancer and my feelings during chemotherapy written in red lipstick and shown on a mirror, as if I were in my dressing room staring them in the face. I was right on board with their ideas. They asked me to write down what it felt like, perhaps after each treatment or in stages. My writing was full of every emotion, many contradictory. For example, overwhelm and acceptance. Some expected, like “angry, worried, frustrated.” Some were perhaps not expected, but more relatable: “joyful, playful, interested.” Yet others were more unexpected and those were the words Bill wanted to go with. They were not what he thought he might feel if he had cancer and therefore more complex to understand. I liked that this deeply empathetic man wanted to go deeper into the nuances of emotions cancer has brought up for me.
The set was constructed in my studio, using the space like it’s never been used before. Both Bill and videographer Dan Sadowsky came in with props three hours prior to the shoot to set the stage and create the perfect lighting. A heavy desk and several lamps where brought up the red door freight elevator and rolled across the long wooden floors into the studio to design this set. Since Bill would be shooting into a mirror to get my reflection what was behind him mattered and would be in the shots. His positioning, to stay out of the image, as well as a second set and lighting behind him, was important. Technically, this was a difficult shoot. Bill’s forethought and preparation as well as the assistance of Dan, Lily and my mother, helped bring all the abstract details together.
Whereas many of the other Finding Beauty in Cancer shoots have been “pretty” fantasy style concepts, Bill wanted his shoot to be darker. I was a little uncomfortable with the idea of showing this side at first, but then realized that by being more vulnerable with all of my emotions someone else might be helped in their process or in understanding what a loved one is going through. Cancer has been a bit of all emotions for me. I don’t want to deny the fact that I feel afraid and in despair, yet I try not to stay in those places longer than I need to. I try to move through them to a place that is more beneficial to me. I want to be happy most of the time, but I feel all of it regardless of what I want. Knowing that I will transition from the darker emotions, that “this too shall pass,” helps me keep moving forward.
Week 15 – The Octopus Shoot, Photographed Week 10. I’m under the sea, on the bottom of the ocean floor. I’m resting there, face up, when the octopus comes out of his hole and wraps himself around my body placing a shell over my right breast. I know it’s there as protection. He’s protecting me…. (continued below)
The water pulses against my body with the “bang, bang, bang” rhythm of sonar waves. Sonar waves, if I’m the whale or fish, I imagine. MRI noise if I’m in my own reality. I’m actually lying in a great white metal machine. One that, if I stay still for 45 minutes, will scan my body and tell me if the cancer has spread beyond my breast and lymph nodes. This is the time before I started chemo, days when I wondered, as I still do some days now, whether the cancer has taken root elsewhere. It’s nerve-wracking to wait. Wait on test results for answers to your life. Never mind it’s a weekend or holiday. Nerve wracking to wait on the “bang, bang, bang” of the machine and so begin to imagine myself hearing what the fish and whales must hear under the sea. I meditate on the rhythm and dream of what they must hear. My body drives through the water and then finally settles upon the ocean floor where I meet my octopus. He holds me safe and I wait with him until the banging stops, then slowly rise to the surface as he dissolves into my body. I know immediately, this must be one of my Finding Beauty in Cancer Shoots.
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.