MY BREAST CANCER JOURNEY
I was referred to a surgeon who performed a biopsy on March 16th. I envisioned God enfolding me in His arms throughout the procedure. I was fascinated by the ultrasound images of my tumor. And the needle gun with a cooling element that took the core biopsy. I took a quick look at the core samples before they were sent off to the lab. During the biopsy my breast was numbed, but I felt the warm blood roll down my body.
On Friday, March 23rd I received the news that yes I had breast cancer. Before that I had gotten quite comfortable in “I don’t know” land. I couldn’t believe what the doctor was saying. I was so afraid I stopped hearing. I could see his lips moving but I could not hear what he was saying. I stopped breathing for several moments. Once I started breathing again, the tears started to flow. I was planning my funeral. I thought that I was going to die that day. Thank God my husband Earl was there to tell me what the doctor had said when we got home.
I started telling people the news and I found that the more people I told the better I felt emotionally. People care but they are scared and don’t know quite what to say. It got even more uncomfortable if I started to cry. I learned to keep my tears in check, so people would not be reluctant to talk to me about what was going on. I learned who I could cry with and not.
On March 28th I had a partial mastectomy (essentially a lumpectomy) and by the end of the month I would start chemotherapy. The surgery was scary. It was made a little less scary by the daily prayer that was broadcast over the hospital intercom. Just at my most vulnerable moment, when I was alone in an exam room right before surgery. I was awake as they rolled me into the operating room. The medical team there impressed me. Everyone shouted out, “OK, this is Denise B., and we are going to operate on her left breast!” Around the room they went, “Left breast,” “Left breast,” Left breast,” until it was my turn to say, “Left breast!” I got caught up in the excitement and was very happy they were going to cut the correct breast. Having heard horror stories of people having the wrong leg amputated.
Hours later I awoke in the hospital room. Earl was there and medical people were coming and going. And there was Chaplain Diane. A beautiful black woman with dreadlocks like mine. She had come to bring a special prayer for me. I was concerned, did I need a chaplain, was I dying? No, she wanted to give me the copy of the prayer she had said for me. I wasn’t able to read it then as I was full of drugs for the pain, but when I read it days later more tears flowed. That prayer was just what I needed.
The first time I felt my left breast after surgery was nerve wracking. I was afraid that the entire breast would be gone. What a relief to find it still there. Then I was curious about all of the dressing and the discovery that there was a drain hanging from my body. What was a drain? Oh, it is going to continually fill with blood. And someone will have to empty it. Oh. OK.
That was a whirlwind month of doctor’s appointments and procedures. I hardly knew what was going on. Earl was keeping up with my appointments. I just showed up, at the beginning that was all I could do. My attitude about the whole ordeal was adjusted when my husband told me early on that, “Yes, you’re going to die, but not from this.” I was able to breathe again after absorbing this new reality. My sponsor said that no one dies from breast cancer anymore. These were words of hope that I clung to. Over time I became more proactive in my treatment. When I was able to drive myself to appointments I was so happy. I felt semi-normal.
I wondered though, what might have caused this. Was it something I ate? Was it the wild and crazy behavior of my youth? Was it the fumes I inhaled from the car painting business I ride past on my bicycle everyday? Was it the plastic I microwaved my food in? No one knows. I just know that this is what is. I have to deal with it.
The results of my pretreatment PET/CT scan showed what was thought to be more cancer in the lymph nodes in my shoulder and behind my breastbone. These areas cannot be reached with surgery. I was preparing for chemo and radiation by having a portable catheter implanted, one more surgical procedure. I discovered that I’m not a candidate for chemo pills because my cancer is triple negative, no estrogen receptor (er), no progesterone receptor (pr) and no human epidermal growth factor receptor 2 (her-2). Turns out that this first PET/CT scan was over read and the cancer had not spread as they first thought. What a relief.
Around this time I started wishing that I could turn back the hands of time. To live without this horrible, life threatening, new knowledge. Cancer was now a permanent part of my life story. Ugggggh. I wanted to have big old pity parties, but that wouldn’t help anything. My husband and doctors encouraged me to keep living, keep moving. I forced myself to do so. Walking and riding my bike as much as I could. These activities reminded me that the rest of my body still functions. I am not just my left breast. I needed to stay strong to fight chemo. I didn’t want to waste precious time being pitiful.
It was hard to believe such harsh words were now connected to me. Breast cancer, chemo, radiation, surgery, porta-caths, PET/CT scans, MRIs, biopsies, and drains. I had been skipping along through life without having any really serious hardships. Well, it’s my turn now. Everyone goes through tough times. Everyone has to face life or death possibilities. I just wasn’t ready yet for it to be me.
As my treatments continued, our home remodel went on. What else was there to do? One of the best days I had at this time was when Yosi our landscaper for the garden, took me to the local nursery here in the San Fernando Valley. There were acres and acres of beautiful blooming plants. We were there to pick out the vines and plants for the backyard garden. Earl hung back while Yosi and I sped all over the place on a flat bed cart making selections.
It was so much fun because we were buying nearly 200 plants. Yosi knows the place like the back of his hand. We filled up the cart 3 times. Yosi would ask me if I liked this plant or that one and when I said, “Yes,” he’d load on 5 to 10 pots of that plant. It was my HGTV dream come true! I forgot for the day that I was waiting to find out the results of my biopsy.
Chemo was weekly for 6 months, beginning April 30th, with daily white blood count booster shots and anti nausea shots in between. As I recovered from the effects of the chemo, I had the fantastically beautiful and peaceful garden as a source of positive energy.
A second bit of happiness during my treatment was that my son got married. He was so happy and I was so happy for him that I felt like I had yet another reason to live. He had been depressed for a long time and I hadn’t seen him smile in years. He sent pictures of himself and his fiancée’ and her daughter, with a big old smile on his face and I was filled with joy. They were even talking about having more kids. I could be a grandmother, something I never thought I’d be excited about.
April 24th I had the first teaching session with Nurse Barbara, to tell us what to expect in the chemo treatments. All of my questions were answered and I came away with a lot of hope and information overload. She was very competent and thorough. She did not however mention that to get to her office we had to walk through the chemo room. What a shock. What a reality check. Everyone looked so pale and sick. Hooked up to the IV s. It’s not a pretty sight. I tried to smile at a couple of the people but I couldn’t sustain it, and I looked away. I would be in that room soon. I hoped to bring some color and life with me. I did bring color to the room, first because there were very few black women in there and second because I wore a deep purple wrap to stay warm and I brought my surgeon teddy bear. (Everyone fell in love with him.) I wore lipstick and new shoes every week. As I reclined in the chemo chair, I enjoyed looking at my shoes. I was told to wear grubby clothes for chemo, but that was not me. When I dressed becomingly in that chemo room, I felt a bit better.
Nurse Barbara said that in 3 weeks all of my hair would fall out. It did. I was OK with that, I would get to wear hats and scarves, or just be bald. I was. First a hair stylist friend cut my long dreadlocks off into a short Afro, as suggested by the nurse. Everyday as I combed my hair more and more hair came out in the comb. Finally there was a big bald spot on the back of my head. I asked my husband to shave my head. It was a great relief to make the decision. It was one of my most loving and intimate experiences ever. I was glad it was Earl doing this for me. He had said he would shave his head, too. I thought he meant some time in the future. But as soon as he finished mine, he shaved his right off. I was very moved by this. My best friend Marsha and my mother asked me to save some of my locks for them. So I washed my hair and had some lovely smelling locks to send to my loved ones.
Later we took pictures. I wanted my family at home to see that we were still standing and smiling. Being bald was strangely liberating, though it took a while to get used to my new look. I was no longer studying my pillow in the morning looking for patches of hair. Plus the fiery tingling in my scalp stopped. I was excited about wearing hats, but now the hats that fit with my dreadlocks were too big. I asked a friend if she would get a hat for me in her shopping travels, she asked if I wanted to go shopping with her. The chemo had me too fatigued for that. A few days later my friend and her husband came by to sit on the patio with us. She had a large bag and I assumed she’d brought something for the house. What she had was a hatbox full of hats, ten hats in every color and style. I was so happy. I was undone by her love and generosity. That was the power of friendship keeping me in the fight.
At one point I just got weary of talking about cancer. I needed to distract myself. Hear someone else’s story. Talking to my support group friends helped with that. I could call people who didn’t know what was happening with me and just listen to what was going on with their day. Listening with joy and much interest. All of this was a part of what I called my Life Saving Procedure. Including all of the gazillions of side effects, too numerous to list here, but worth enduring to keep living.
Some nights the chemo chemicals sparked off me like crazy. They flushed from my eyes and scalp. I could smell it coming from my pores. There was a chemical taste in my mouth all of the time. I couldn’t taste my food. That was the hardest part of the treatment. I was forcing myself to eat then. Food tasted terrible, but as a compulsive overeater, it was easy to force down food, even if it tasted like metal. I did like the fact that no matter how much I ate, I stayed thin. I loved the way my clothes fit.
We took a little break from treatment and doctors for a trip to Jamaica. I saw a picture from that trip and I thought I was looking OK when I took the picture. Looking at it later I saw that I could barely keep my left eye open. My face looked so tired. I’ve since shredded those pictures. I had chemo brain, I could hardly spell, reading was difficult and reading is my favorite past time. Thinking and speaking was hard, words got turned around. Some days I was thin, some days my face was puffy. I hated that chemo. Even though it was saving my life, I still feel that there must be a less toxic way to treat this illness.
Sometimes I would just cry. Sometimes being upbeat and positive about breast cancer would be more than I could manage. I would get frustrated at trying to work up an outfit and then remember, oh, what will I put on my bald head. I did like my cheekbones and thinner thighs, not having to shave my legs and underarms or wash my hair. I’d just put my head under the shower, wipe it and go.
It took about three months before I really came to the leading edge of acceptance of what I was going through. When I looked into the mirror I could literally see the barest essence of myself. With no hair, eyelashes or eyebrows my eyes looked darker and deeper.
The breast cancer information said not to try to lose weight during chemo. It was tempting with no appetite and all, but the burn was too much. I could feel that chemo burning through the food I would eat. The info also said that life after treatment might not be the same as it was before. That it takes six months to a year to get back to your previous physical condition.
The arm where my surgery was will never be the same. I will always need to exercise it to avoid swelling from the lymph nodes removal. It said there would be a kind of post-treatment depression once treatment is done. That wasn’t my experience. I was so happy that I didn’t have to keep going to doctor’s appointments. But what did happen is that my body went “kaflooy”, that’s the medical term my radiation nurse used. I had all kinds of breakouts and infections that needed treatment. So it took another month after treatment to kind of get back to semi-normal. They talked about the anxiety that comes before future check ups and the concern about recurrence of cancer. I do worry about that.
Two weeks after chemo and before radiation my hair started growing back. The radiation didn’t take out the hair on my head, only the hair near the radiation site. Still didn’t have to shave the underarms. I’m still waiting for my eyelashes and eyebrows to come back in completely.
When my chemo treatments were complete I had a second PET/CT scan that came back normal. I broke down in tears of joy from deep in my gut. I had a few weeks break and then radiation began for 6 weeks everyday 5 days on 2 days off. Radiation was a cakewalk compared to chemo. I was told that I would feel some fatigue by the end of the treatments. I had 33 treatments.
During radiation, which was so much easier than chemo, I was able to drive myself to the daily treatments, which lasted about 15 minutes each. At first it was easy on my skin and I was given some creams and potions to apply to the affected area. Over time that area darkened and at the end in the last 5 treatments it became painful. It was like a really, really really bad sunburn. The last treatments concentrated the radiation beams on the area where the cancerous lump was removed. Owww.
In the radiation waiting room a sort of camaraderie developed. We’d sit there, men and women in our skimpy hospital gowns trying to hold on to our last shreds of dignity as we’d shared our stories. I was able to put my illness into its proper perspective when I heard the others’ stories. Some were getting their heads, faces and prostates zapped. Some didn’t have enough insurance and weren’t able to complete their treatments. Some didn’t have transportation to the hospital. Some had been shuffled around from hospital to hospital piecing together their treatment plan. One nice lady would bring insurance information to the waiting room to share. We counted down the days and then we all celebrated when it was the last day of treatment.
I was reluctant to celebrate too much when my treatment was complete. I don’t want to temp fate. There is still that fear that the cancer will return. But whatever happens I will keep moving forward. Keep fighting.
I had no choice but to fight. I had my husband pushing and pulling me through recovery. I have my support group fellowship, my prayer warriors, my family and friends, who I think of as my Village; I have God who is with me always. So I get to step up to the plate and handle this with grace and courage.
My support group fellowship was and still is a huge help to me. They shared their experience, strength and hope with me. Showing me their breast cancer scars and telling me how long they have survived, one for eight years, another for 12 years. They let me cry on their shoulders when I was first diagnosed and afterward. I could share with them my fears and concerns and they didn’t recoil. They had already faced this fear and were no longer afraid.
My Village lifted me up in prayer. Many times I literally felt lifted. Our neighbors prayed for me. Across the street, Rose told me that the whole Armenian Church was praying for me. She brought home cooked food for me. Evelyn next door sat with me and assured me that she would see me riding my bike in the neighborhood again soon. My cousin in Texas is a prayer warrior (who knew?). She drove to San Marcos from Houston to lay hands on me when we visited there. Kathy came and brought soup and sat with me in the garden some days. Jill and Lynn brought flowers and sat with me. Barbara brought me books that I read in the garden. Juanita helped me pack for a trip. Marsha and Bootsie flew in from my hometown just see for themselves how I was doing. Pam sat with me even though she had recently had surgery. Gina, Eve, and Barbara drove me to chemo on the days Earl couldn’t. They all helped me make it through. I am eternally grateful to them all. I have survived incest, domestic violence, drug abuse, compulsive overeating and lots of other things that could have killed me and I’m still here, I’m not ready to die, I’m still standing.