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.