Six and a half years now. When people find out that I am a breast cancer survivor, they inevitably ask, “How are you doing now?”
What runs through my head at this point is, do I tell them about the constant dull ache in my right breast and side? That despite my right breast being mostly numb, pressure on it makes it hurt more. Do I tell them that I can no longer wear a bra; the pressure from the band rests on a lot of scar tissue and is too painful for me to manage? Do I tell them about the plastic surgeon I was referred to early on in my treatment plan? The breast surgeon highly recommended I do this and get to know what my options were. The breast surgeon also recommended a partial mastectomy, as I had plenty of breast tissue to spare. Do I tell them how the plastic surgeon pressured me to do what she wanted to do at a time when I was most vulnerable, as well as sick and exhausted from the chemotherapy?
Do I tell them how afraid I was when the plastic surgeon grabbed the bottom half of my right breast and said this is how much the breast surgeon is going to remove, just slice across this area, creating a flat spot right beneath the edge of your areola. I was in shock. I had no idea that I was going to lose a little over half my breast when the first surgery was complete. She showed my husband and I the most horrid pictures of mastectomy scars and full breast reconstruction after radiation therapy that are much harder to complete as the skin does not react like normal skin. I saw the look on his face when we saw these “butcher job” photos, which were used to scare us into doing what she wanted. I realize now, years later, that this was how she treated patients who seemed reluctant to make any decisions about reconstruction/reductions or any kind of fixing of their breasts after the initial cancer removal surgery.
Do I tell them that the horrified look on my husband’s face is what sealed the deal for me even though I was still not sure what or how I wanted to fix what would obviously be an imbalance of my breasts? I never wanted him to look at me the way he looked at those photos. Do I explain that after the reduction of my left breast and restructuring of the remaining tissue in my right breast, the plastic surgeon pulled the drain from my right breast three days later? While doing this, despite me telling her the fluid output was still high, I developed a large seroma that put enough pressure on my incisions to leak through at the bottom of my right breast. When I went for my two-week check-up and told her that I was leaking, she immediately told me I was wrong. My husband had to point out the fluid dripping down my torso for her to accept that the fluid was seeping through the conjunction point of the surgical incisions. Because my incision was compromised, she had to drain the area, and it now had to be an open wound. She used the wooden end of a long cotton swab to poke the small hole open to enlarge it, tearing the newly forming scar tissue. She was not prepared for the amount of fluid that had built up in my right breast, despite telling me when she opened up the original incision to do what she needed to do to make the right breast resemble the left beast again that there was a very large seroma then, and she collected over 160ml of fluid during the surgery. How could she not be prepared for a similar amount of fluid buildup? I had serous fluid all over me as the plastic surgeon and her PA dashed for cotton pads and chucks to dry me off with and to catch the remaining fluid draining out of the hole in the bottom of my right breast where it meets the chest wall.
Do I tell them about the home health nurse who had to come out to show my husband how to pack my now open wound inside my breast with ¼” wide cotton tape twice a day to absorb the fluids so my wound would heal? Do I tell them that it took over a yard of that tape twice a day for weeks? Do I tell them that at my three-week check-up, the healing inside my right breast had slowed to a crawl, and the plastic surgeon said she had to debride the wound to promote healing? Despite shooting my breast up with lidocaine, when she pressed on it, I could still feel it, not the pressure, the pain. She again told me I was wrong and went forward with the debridement. She stuck a scalpel through that hole and proceeded to poke and scrape the open areas of my breast, even with me telling her it hurt with tears running down my face. She said I was just being melodramatic and to get over it.
Do I tell them that at my 6-week check-up, I still had an open cavity in my right breast? The plastic surgeon then decided she would have to close the remaining gaps surgically and had her PA schedule the surgery. Do I tell them that the plastic surgeon had realized by this point I really did not like her or how she treated me, and her PA knew this as well?
Do I tell them the trauma of waking from that surgery in so much pain that I immediately cried out and had tears streaming down my face and could not remove the severe grimace of pain from my face no matter how much I tried for the two nurses attending to me in recovery? I was administered pain meds intravenously immediately, but in those few short moments from initial consciousness, administration of pain meds until relief, I wanted to yell and scream at the top of my lungs at the torture I was feeling. I wanted to wail about the traumas I have been through and my anger at the abuse of this particular doctor. During those first moments of agony, I knew in my heart that the Plastic Surgeon had deliberately held off additional pain med administration prior to releasing me to recovery. I suffered, I cried, and after two intravenous injections by the recovery nurses, I was finally able to relax and doze as the anesthetics wore off. Do I tell them that this has left me so traumatized I fear any new surgery?
Do I tell them that I hate my breasts now? My right breast is visibly smaller than my left, and the left breast has deviations that it never had before. There is a little notch now in my areola; there is no breast tissue at the conjunction of my incisions, so when you press there, you go straight to the chest wall, which is painful, and there is an indentation close to the left side of my areola that puffs back out at the edge of the areola. I am ashamed of these changes to my once beautiful breasts. I now try to hide my breasts with loose clothing and scarves to draw all attention away from them. Do I tell them that I am terrified of trying to fix them because of the last surgery?
Do I tell them that living with this pain, along with my neuropathy, is exhausting? Do I tell them that my sleep is now inconsistent, as I wake from dreams easily and then my mind goes to the dark places? The dark places where my worry of a new cancer and worry of dying without dignity reside. The worry about how I am now at higher risk for secondary cancer, lymphoma, sarcoma, bone cancer, and lung cancer. All the radiation I have been subjected to due to Thyroid cancer and now this Breast cancer elevates my risks. The dark places contain all these worries and fears I have for my family if I do develop secondary cancer that defies all treatment. The dark places are where I stash all this and avoid it during daylight hours so no one catches a glimpse of the tears I shed and the praying I do when I am there. Do I tell them that when I am too tired mentally to deal with the dark places, I divert my brain with games or reading until I can fall back to sleep again?
Do I tell them of my breathing difficulties? I had this horrendous cough when I laughed or was breathing hard that developed after chemo. This cough was a deep, lung-seizing cough that those around me could see me struggling to breathe. It became the running joke for the five years I dealt with this cough, “What killed Kim”? Whatever made me laugh last. Do I tell them how many times this kept me from my family or friends because I just didn’t have the energy to struggle to breathe? Do I tell them that it took one of my friends to put her foot down and tell me to ignore all the doctors who were saying this is part of my neuropathy and demand a referral to a Pulmonologist?
I did this after struggling with this cough for over 5 years. I was diagnosed with severe Chronic Bronchitis and now use an inhaler twice a day. Do I tell them how I love that I can laugh and do cardio without feeling like I am going to die, but there are times that I hate the side effects, phlegm accumulating in my throat, making me cough and hack at the most inopportune times? I avoid talking on the phone as much as possible because I never know when I will have to clear my throat in someone’s ear so I can talk. In addition, most of the time, I now sound like a 40-year, 4-pack-a-day 60-year-old smoker. Most of the time, I do not mind as I have the ability to laugh freely again, and I love being able to laugh. I take these side effects from my inhaler in stride, but on the off occasion, I am self-conscious of how I sound.
Do I tell them of the sorrow I carry with me for the loss of friends I’ve made in this new Breast Cancer community I find myself in? The grief remains and is stashed in that dark place with all the other things that I do not want to see all the time. Occasionally it comes out when something reminds me of one of “my girls”. It’s not as scary as so much of the other dark place stuff is, but it reminds me that this life is fleeting. Then I remember the good times we had together, say a little prayer and thank them so much for their friendship, and tell them I still love them and miss them, put my grief back into the dark place, and move on once more.
Do I tell them that I still mourn for my pre-chemo brain? The one that let me be a good teacher to those just coming into the industry I work in, let me talk and walk at the same time, the one that allowed me the brain power to reprioritize in a fast-paced environment, stop what I was working on, help with an emergency, and be able to pick right up where I left off brain. That brain. That brain is no more. If I am trying to order an Uber, I cannot tell you what I am doing or where I am in the process. My brain does not allow this. Do I tell them how many breakdowns I had, tears shed in frustration because I could not communicate before we realized this was the new “normal”?
How I tried to go back to work that I loved but I could not manage it, my brain would not accommodate quick decision making and reprioritizing, no matter how many tricks I employed to help manage an ever expanding work load, or try to come up with out of the box thinking. My brain is very linear now. I have to stick with one thing at a time for the most part. I have gotten better than it was right after chemo. I can now knit and watch TV or talk, but I do make more mistakes. It’s taken a long time to retrain my brain to find mistakes in my knitting, but even then, I have a very hard time finding them. I have probably un-knit and ripped out more crochet rows of work than I have completed since my cancer treatment started way back in late 2017. Because my brain does not work well under high-stress situations, it freezes and does not allow words to come out of my mouth. I can think of them, but in a high-stress situation, I cannot say them. This has led to me stepping back from work I loved to doing what I can do, I help with data entry at the company I worked for when I was first diagnosed. They are understanding and know that my body and brain no longer work like they did pre-cancer. It’s a good fit, and I am very lucky to have such generous people in my life.
Do I tell them of the loss I still feel for my pre-cancer innocence? The time when I never had to know cancer statistics, chemotherapy protocols, infusion intervals, nausea management, and radiation burn management? Do tell them I long for those days of inexperience on bad days, when dealing with all the minor pains and the fatigue that comes with it, when I get home from a 6-hour work day so exhausted I fall asleep on the sofa almost as soon as I sit down? How going to a yoga class, then shopping and putting away my groceries is a basic day. Doing more than that on a Saturday leaves me in so much pain I can’t sleep. The Saturdays I push myself to meal prep for the week after yoga and shopping leave me in so much pain by the end of the day I cannot sleep. And this is pain that is not managed with analgesics; it’s neuropathy pain. Different medications that upping the dosage on a bad day are not an option. I have to lay in bed as I try to self-soothe the burning, stabbing, hot daggers of pain moving through my feet and hands until exhaustion finally overtakes me, and I am asleep and no longer feeling the sensations from chemo-damaged nerves.
As I formulate my answer, all this and more quickly runs through my head. Then my heart pipes in, remember how thankful you are to be alive. Tell them how much more you appreciate your friends and family. How lucky you feel to have so much good in your life, your husband, your children, parents, brothers, friends, and co-workers. The generous amounts of support you received during and after, to this day, from so many. The doctors who did the best they could to keep you alive, keep you here where you want to be, with all these wonderful people in your life. The beauty you see every day. How you watch for the little things to bring a smile to your face now.
How you love it when the setting sun lights the back patio, with the blackbirds coming to sing the sun down. How you relish your drives to work during the week so you can see any new happenings along the way, like the Blue Heron that was standing in the park, warily eyeing the people walking and jogging, the dogs enjoying their time to explore along the walking path with their owners, and probably wondering why in the world would the Canadian Geese be willing to get so close to the humans. Or when I catch squirrels and crows gossiping together. I love those sightings.
Tell them about how you love people watching in the moments you have while at stop lights, seeing the proud, tall, and slender black woman who gracefully, powerfully, and unapologetically strode down the street with an eye-catching afro of white-blond on the bottom half and a rich dark brown almost black top half, that looked at me with a “Whatchu lookin’ at white girl” attitude as I looked at her with a big smile on my face. If I had not been three lanes away from her I would have rolled down my window and told her how much I loved her hair and her physical I don’t take no shit attitude. My heart reminds me that I have so much more good in my life than bad, so I don’t need to tell them of all my pains, frustrations, and fears.
My answer is what they really want to know: “I am good. No evidence of disease, and I am ever so grateful to be alive.” This is the truth, and I am so thankful they do not have to know the reality of being a survivor of an aggressive form of cancer that was treated aggressively to keep you alive, not necessarily “whole”. I am a new type of whole; my soul is intact, and my heart is healing. My family remains my biggest fan club, and I couldn’t be happier. When I utter my words, “I am good…” they have no idea of all that the word good contains. But let them live in the bliss of ignorance; everyone does not need to know what it takes to survive this kind of cancer. Only those select few who understand the battle waged and won. Someday this will be a thing of the past. There will not be battle scars.
Life is counting your blessings every day
