Words That Haunt
“I am sorry your biopsy results show that you have invasive ductal carcinoma, it is most likely stage 3 and it has spread to your lymph nodes.” Hearing that sentence sent shock waves through my body and my mind.
I had been in happy denial for months. A year prior to being diagnosed, in May of 2017, I had felt a lump on my breast while in the shower. I also was getting shooting pain in my breast once in a while, but breast cancer doesn’t cause pain I thought. I was in the middle of moving and I was busy with life. I also never thought it could be cancer, my family didn’t have history of breast cancer, as far as I knew, and I had just turned 40. It would take me another 6 months before I had my first ever mammogram. It was a few days later when I got a letter stating that I needed a diagnostic mammogram that I first felt panic. That would come back as clear for cancer but that I need to come back in six months. The sense of relief was amazing, I was overjoyed but I wanted to get to the bottom of what was causing the pain and lump.
I would spend the next couple of months consulting doctors. I would be told by a surgeon it is just normal breast tissue and to come back in six months. I was very happy to hear that, but something inside of me kept nagging me for answers. I was sure it wasn’t cancer but it was getting painful enough to bother me. Through the next three months I would fight for answers as my symptoms worsened week after week, and would soon be back at the surgeons. “What are you doing here? I told you to come back in 6 months, it’s only been 3.” He proceeded to do a breast exam. I could see his face change, he was concerned and he booked my biopsy a week later.
Though I saw the concern on my surgeon’s face I still remained positive. The odds were on my side. I mean they don’t start mammogram’s on women till they reach 40 and I had just turned 41. They wanted to do another mammogram but I had just gotten one 4 months prior and it showed nothing even though I could feel the lump and now my breast was in so much pain that a mammogram machine felt like a torture chamber, so they decided to do an ultrasound instead. I would point to the lump and the second new lump under my arm. It didn’t take long for the ultrasound technician to rule out the masses were suspicious. The doctor injected a numbing agent into the extraction areas. The needle biopsy would be fast and as soon as it was over, I would feel this heaviness come over me. I got really cold and I couldn’t breath. I felt like I was going to die and that was my first panic attack. The doctor would come in and the nurse would hold my hand and ask me if I brought anyone with me. I didn’t. Prior to coming I thought there was no way this was cancer and I wasn’t about to make a big deal of it and have someone come with me. But there I was unable to control myself. It would take longer for the nurses to calm me down than for the whole procedure. I would drive myself home and again I would be back in my happy bubble of ignorance.
I was diagnosed on April 23, 2018. I was so sure that I can be positive enough to make cancer be the last possible cause of my symptoms that I didn’t bring anyone with me to my appointment, just my two year old son.
The surgeon started talking to me about surgeries and bombarded me with all sorts of information but the whole time he was talking I could only focus on not falling apart. I felt like my breath was taken away, my mind was foggy and I tuned out for the most part. As soon as he left that room I started sobbing uncontrollably, the nurse hugged me and told me I would be ok. The more I looked at my son the more I cried. I thought of my 6 year old daughter. They were too young to have to go through this. I have always been very independent and the thought of not being able to care for my family, nevertheless myself, was hard. I had just moved to this country and hardly knew anyone and being faced with my own mortality was something I just couldn’t deal with. I couldn’t think clearly. I was mostly afraid.
My fear was almost incapacitating. I had panic attacks. I would imagine the cancer spreading and invading my body and my mind. I was having pains everywhere, my heart would race, I would have headaches, my limbs would go numb. Luckily, I had a very supportive husband. He was the only one who was able to calm my fears. He would make me laugh and force me to watch sitcoms with him. If it wasn’t for him I probably would have died from shear fear. I was also angry. Very angry. I was angry with myself for ignoring it, I was angry at my doctors for not catching it, I was angry at my body for letting me down.
If you Want God to Laugh, Tell him your Plans
My surgeon had recommended I do surgery ASAP. I just wanted the cancer out of my body so I booked the first surgical appointment he could give me, which was a week later. Fate would play a hand in finding me the right care though. Friend’s of ours an oncologist and a plastic surgeon would advise me not to go through with the surgery to first find out the type. If I was Her2+ I would need to start with chemo, as it is an aggressive cancer. I was advised to see a breast surgeon instead of a general surgeon. I heard them but at the same time just wanted the cancer out. My surgeon said he couldn’t get me an oncologist appointment for another month. I didn’t want to wait and even though this was the same surgeon who 3 months earlier decided my lump was just normal tissue, he was my only hope to get the cancer out. I couldn’t just sit and wait for this cancer to spread, it was already in my lymph nodes and who knows where else.
If you believe in signs well then you would believe I was hit by billboards. Days later my husband’s colleague insisted I call a friend of his who was a plastic surgeon. The plastic surgeon would repeat what our medical friends said and he would recommend I see one of his colleagues who specialized in breast cancer surgery. I told him point blank I made up my mind I want to do the surgery and unless I can get an appointment in the next couple of days I am going through surgery. The next day we would drive 1.5 hrs out of town to meet the breast surgeon. He would turn out to be one of the best doctors I have met in my life. He didn’t want to jump into surgery and instead advised me to get my cancer type and see an oncologist. I explained I couldn’t find an oncologist and he said he could get me in to see someone in his city in the next week. That’s when I put my pride aside and placed a few phone calls to friends that I knew had connections to the medical field and I was able to secure an appointment the next week with an oncologist. During that time my cancer type results were out and I sent them to my husband’s friend who saw my triple positive cancer type and suggested I need to start chemo immediately. I cancelled my appointment with the first surgeon. My oncologist also agreed that I needed to start chemo and so two weeks after being diagnosed I started chemo.
A lot of people going through cancer have reluctance about chemo and its side effects, but I jumped straight in. I was actually looking forward to starting chemo. I saw chemo as my medicine, one with many side effects but it would help me live longer and kill the cancer. I would have to do 6 rounds of TCHP chemo spaced three weeks apart and I would do a full year of HP targeted chemo. It didn’t sound like a lot. I was going to lose my hair as well as a possibility of it being permanent but I didn’t care, I wanted to be there for my kids. My kids were so young and if I died they would miss out on having a mom for even the smallest of milestones like taking my son to his first day of kindergarten which was still three years away. Or my daughter not having a mom to watch her graduate from elementary school, which was four years away. I not only wanted to be there for these smallest of milestones but for all of them. Damn it, I had just turned 41 and I still needed my mom. I was scared not so much for myself but for the future of my kids, I cried at the idea of them growing up without a mom. I felt weak and out of control and chemo was how I was able to finally feel like I was doing something, that I finally had a weapon to defeat cancer.
Chemo was one of the hardest things I have done in my life. I would have ten awful days starting the second day after a round, then I would start to feel good and would have one decent week and then back to chemo. I started looking at the time as fractions. 2/6 was one third of the way done 3/6 was half way done and so forth. My least bothersome side effect was losing my hair. I would joke that chemo left me so exhausted that not having to deal with hair during a shower was a blessing. My side effects were nausea, diarrhea, constipation, runny nose, teary eyes, dry skin, dry everything actually, eating was difficult, going to the bathroom was painful. But I kept my countdown and I kept looking forward to chemo days.
It’s OK to be Weak, to ask for Help
What made going through chemo bearable was coming to the realisation that I need to accept help and ask for help. For someone who was always the strong one, I had to be ok with being physically and sometimes mentally weak and allowing others to manage all the things I used to manage. As soon as I was diagnosed, my neighbors put together a meal train. One of my neighbors was able to find me a reliable nanny to watch my kids while I rested. My brothers left their work and families over seas for one month each and saw me through four rounds of chemo between them and my aunt came from Canada and helped through my last round. My step daughter decided to do online classes during her summer semester so she could help out with chores. My husband was my rock, whenever I felt down he found a way to cheer me up. I felt so much love from family and friends and the moral support I got was probably more important than anything. There were many days that I was too tired and couldn’t pick up the phone to answer a call but those on the other line understood and gave me my space when I needed it and were there for me when I needed it too. There was an outpouring of love, and prayer and it helped through all the suffering.
Cancer Free but Still Fighting
My last day of chemo was August 20th, 2018, and I had set up an appointment for my lumpectomy surgery and sentinel node biopsy exactly one month later and again I was looking forward to finally being cancer free. In my heart I was set on having a complete response to chemo, and after surgery I was told it looked like there was no evidence of cancer in the frozen section pathology. However, a few days after surgery I got a call from my surgeon. Though I had an excellent response of 90% reduction, I still had residual cancer in two of the three sentinel nodes removed and had to decide on removing the rest of my auxiliary nodes or just depend on radiation. I would have to make the final decision and so I booked my appointment for radiation on October 22, 2018. I had set my plan and though I still had reservations about which way to go I decided to move forward.
Two weeks before I was supposed to start radiation life threw me another curve ball. A hurricane was approaching the city I lived in and we had to evacuate. On Oct 10th, 2018 a category 5 hurricane hit the city I lived in. Though I was six hours away safe spending quality time with my family, knowing that I still had another 6 months of targeted chemo and my radiation was supposed to start soon I started to panic. The next morning, I would call my doctors and I would find out all forms of communication were down and seeing the devastation I worried I wouldn’t even have a home to get back to. In the next few days, we would learn that our home was damaged enough that we would not be able to live in it, that my chemo oncologist clinic was destroyed and that there was no way of reaching my radiation oncologist. Time was ticking but I was able to get a hold of my surgeon and he was able to find me both an oncologist to take over my treatment and another for my radiation. I would also change my mind about getting the rest of my auxillary nodes removed and go ahead and schedule surgery, only to find out that there was no cancer left after all.
My first sign of trauma showed up after my second surgery. Though throughout chemo I never felt physically unattractive it was only after chemo ended that I started having trouble looking at myself in the mirror. I was bald and I had lost the last of my lashes and my eyebrows were thinning out more and more every day. I was more bald one month post chemo than at any time. It is weird looking at yourself bald but when you have zero eyelashes and sparse eyebrows you start not recognizing yourself. So, 2 months after chemo I started comparing my hair growth to every Instagram cancer survivor. They were starting to look like they have buzz cuts and I looked balder than ever. The eyelashes and eyebrows bothered me most. I felt like an alien every time I looked at the mirror. The idea of being faced with permanent hair loss was overwhelming. I was ashamed of so vein but at the same time I couldn’t help myself. I remember nights not being able to sleep. Nights where I would cry to my husband while he reassured me I was beautiful and not to worry. It was he who pulled me out of that dark hole and a month after my hair would show signs of growth and I would start feeling better again.
I would continue my targeted treatment at my new oncologist clinic and start my radiation, 32 sessions. Radiation was the easiest of all the treatments in my case. But finishing radiation was not the end I would still have 3 more months of targeted chemo. Targeted chemo was supposed to be the easiest part. Yes, it would cause some GI issues and some fatigue but nothing compared to chemo. At least that’s how I felt about it.
It’s Not Over Yet
2019 started great. I was done radiation, my home was being rebuilt after the hurricane damage and I was living by the beach in a beautiful rental. But sometimes trauma shows up when the fighting stops. My second battle with anxiety started as I kept reading more and more about cancer recurrence. Fear would creep up and haunt my thoughts. I couldn’t share these feelings and worries because again I felt guilty for not appreciating my life. It was mere weeks after that, that my targeted treatment was starting to take its toll on my body. For months I’ve had GI issues and pain and it kept on getting worse. By end of March I was in constant pain and by mid April I couldn’t do the simplest of chores. I was no longer able to drive and I would have to lay down for the majority of the day. I was on heavy pain killers and I was being driven to see specialists to figure out what was wrong. Doctors said it will get better on its own. The pain only got worse. At the same time I had to do my annual mammogram and an ultrasound of my uterus and ovaries because the medication I was on to prevent my cancer from coming back also increased my chances of endometrial cancers. I had both scheduled for the same day. At the mammogram radiology clinic I received the news that it looked like I might have a recurrence and needed to schedule a biopsy. I left the clinic defeated only to hear from my gynecologist an hour later that my ovaries show signs of cancer and we can either watch them over the next few months or I could remove them and get pathology to analyze if I indeed had cancer. Needless to say it was all too much to bear.
Seeing the Light at the End of the Tunnel
My pain was so severe and the news of possibly more cancer to deal with left me severely depressed and would wish I was dead. I would reach out to god to ease my pain, I would ask friends and family to pray for me. My friend would share meditation with me. When the medicine stopped easing the pain I would pray and meditate. I would focus on one meditation mantra that said “as long as you are breathing there is more right in you than wrong, no matter what is wrong”. It made me realize the miracle of our bodies. How even with so much wrong, god is still blessing us with many fold more of good. Many people reached out to me with prayers and it helped heal my mind
I would go on to get a breast biopsy whose results would be benign. I would be saved by the same surgeon who removed my cancer. He would find out that my tear was causing an ulcer and he would go in and fix everything. I would get my ovaries out and they too would come back benign. By the end of May I was back to being able to drive and my pain would be managed with over the counter pills. It felt like I had been given a new lease on life. It was a battle and though I came out of it scarred, I also came out happier than ever with an appreciation and gratitude for all of god’s blessings that allowed me to be here. I thank god everyday for this life. I see blessings in everything, I mean who would have thought I would be thanking god for doing the dishes. But being unable to do the smallest of chores has left me grateful to be able and healthy to do them.