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.
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!
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!
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
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.
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.
I feel tired. Tired and in pain this past week. I’ve started my new chemo drug Taxol. This will be the drug of choice for the remaining 3 treatments. The symptoms are different, maybe somewhat better, maybe not. I have pain throughout my body now. It’s more than an ache and less than terrible. It feels just like fibromyalgia pain did. All over and intense at time. The nausea is less than with the A/C drugs, but still enough to need meds. The big bonus is not having to take steroid pills for 3-5 days after the treatment. They give it to me in the cocktail but it didn’t make me totally crazy this time. Semi-crazy. Lots of tears. Lot of fatigue. Lots of pain. Unfortunately, the first level of treatment for pain, beyond over the counter drugs that do not help, are steroids. No! The mouth sores that kept me from eating or drinking regularly last week are healing after antibiotics. They caused the worse pain I’ve had so far. It hurt to talk, drink water and forget eating without numbing my entire mouth. I’m on day 7 now and have not been able to work more than a couple of hours. No energy, no stability (I fell down the stairs last night, but did not get hurt). I’m having my suddenly-low blood pressure checked out tomorrow and have more IV fluids scheduled. That may be another new piece of my treatment. Twice a week it’s back to the clinic for 2 hours of fluids just to stay hydrated so I can recovery in time for the next treatment. Not the most fun I’ve had… Not the worst time I’ve had – but close.
The photo below is of one week’s worth of medication and supplements. I feel like I eat in order to take these pills every few hours. The boxes do not include the 2 additional nausea medications I take every 6 and 8 hours, nor the various powders and potions from the naturopath that I mix into water. I’m hoping to cut back the nausea medication with this new round of Taxol. So far, it’s better than the A/C treatments! Good news.
FYI- You may have your own opinion on taking so many pills and what you would do instead. That’s great. I’m not interested in ranting emails about miracle cures and diets, however. I’ll write a very funny post on the crazy, although well-intended, things strangers have sent me in the name of ‘curing my cancer.” People who say, “If you’re serious about curing your cancer….” as if I’m not already. This photo is simply to show you what I’m actually doing. It’s my choice to follow both my MD and ND recommendations in addition to a specific diet and exercise program. I have faith they will work, but as with any cancer treatment, no one really knows. There is no cure for breast cancer. There is remission. There is not seeing cancer cells too small to detect and calling it cured. There is living the rest of your life in remission, living with breast cancer, and there is death from breast cancer. One of these will be my path. In the meantime, I do what I think is best and learn as I go.