In honor of National Blood Cancer Awareness Month this September, I wanted to share my story of being diagnosed with cancer and the hard decisions that come with this, including treatment and medication options. This article is the first in a three-part series.
It was August 2, 2004, my stepmother and stepfather both have the same birthday. I was at a birthday party for my stepmom and I was thoroughly enjoying myself - laughing, eating, telling stories. I was not with my fiancé that day. We were getting married in five days and he was no doubt busy doing last minute prep work or entertaining family that was in town for our weekend celebration.
While my stepmom Janice was opening presents, I sat close by watching and enacted a recent posture I had adopted. I would sit with my left hand closed over my body and my right hand grasping my neck as if I was strangling myself. I have no clue why I was doing it; intuitive I guess. It was odd behavior for me but I am glad I did it. According to psychologist Amy Cuddy’s research (and worthy of learning more in her TED talk https://www.ted.com/speakers/amy_cuddy) this is one of the weakest forms of body language you can express. It all made sense to me later on. The grasping of my neck allowed me to feel an impending lump that was protruding out of my neck and seemed to originate from under my collarbone. As I sat and watched gifts being unwrapped, I wanted to vomit. I wanted to express this thing out of my neck and knew it didn’t belong. I had no idea it would later be referred to as cancer.
I rushed over to my mom’s house after the party to see my stepdad, a doctor. He looked at it and knowing I would walk down the aisle to get married in five days, he gave me antibiotics. The antibiotics were a stall tactic for him. His expertise told him that the position of the lump and my age did not paint a pretty picture for me. My stepdad knew it was likely a malignant tumor but he kept that to himself. Telling me we would take a look at it when I returned from my honeymoon.
I sort of forgot about the lump although I did mention it to friends, mainly in the context of “Is this going to show up in my wedding pictures?” or “How will I be able to go to the spa day I have planned with this thing on my neck - I hope I don’t freak someone out!” or my favorite one, “I hope a doctor doesn’t think he is giving me a shot in this lump because I won’t have it.” I pushed the lump to the back of my thoughts and never took the meds my stepdad gave me. I had a deep belief that overuse of antibiotics was bad me for, the overall population, and our environment. That belief would help me later down the road when I received chemotherapy.
As I waited to get married August 7th of that year, I sat in a holding room at the church unable to hold my flowers. My arm was numb. It was a dull numbing pain. I was so tired. I felt pretty guilty. Was I just overly exhausted from all the festivities that had been going on for the last few months? I wanted to snap out of it - it was my wedding day! I certainly didn’t tell anyone how I was feeling. I didn’t know it but I had a tumor the size of a grapefruit sitting on my heart, pressing on my lungs, and effecting all the nerves in that sensitive area. As I walked into a reception with 300 people waiting to celebrate my marriage, I just wanted Advil or something to help my pain.
The next morning, my parents took me and my husband to the airport. I couldn’t handle my luggage because of my arm numbness. I was so tired, I could hardly function. Thankfully, the one person that was used to my tiredness was my new husband. He had experienced this for years. So I felt somewhat comfortable around him to express my need to sleep. Not exactly the most exciting way to spend a honeymoon but there was no way other way for me. Our arrival back to Tampa greeted us with a near miss of Hurricane Charley and my stepdad waiting to look at my neck. I found myself rolling my eyes at this intrusion. I told him this was old news. Denial is a strange gift our brain gives us. I told him it was going away. He corrected me - no it’s bigger.
I went to an internal medicine doctor a few days later, an appointment I did not make for myself. The day was surreal and very movie-like to me. All I cared about was that I had to get my blood drawn. Looking back, all the doctors I saw that day knew from the first look at my tumor knew it was cancerous. My needle phobia kept me clueless of their obvious concern. I went from a doctor’s office straight to the hospital where they did scans with contrast. My stepmom Janice was with me; she used to be an X-ray tech at this hospital. The staff called her back and she gladly went to see what they had to say. She came out and looked like she saw a ghost and told me to call my mom so she too could join us. I thought this was all just way too much drama for me. What was the big deal? But I did call my mom and told her she needed to leave work to join me. My mom immediately left work and rushed over to the hospital to meet us. While I waited, I wondered if everything was okay at home with my dad or my sisters and that’s why Janice was upset - totally clueless it was in fact my situation that was making her upset. The radiologist came out and personally told me I needed to see a surgeon. What?! Yes, this growth was ugly but geez, I don’t need surgery. Certainly no need to see a surgeon and get this removed. I could deal with it.
While, I waited to be seen on that same day by a surgeon (this is very uncommon to go through all of this in one day - this process can take weeks or months even) I just wanted to go to the mall to get a sweater. I was living in Florida and my former college roommate and childhood friend was getting married in a few days in North Carolina. It was going to be a chilly September up there and I did not have a sweater that would go with my dress. My mom tried to tell me I might not be going to the wedding. As I argued that ridiculous comment, she obliged and took me to the mall. Both sets of my parents knew what I had and no one could bare to tell me the news. My parents urged me to call my husband and get him to the surgeon’s office. I called him and told him to please not join this drama and anxiety filled crew I was stuck with. I told him to enjoy his day at work and I would fill him in on all the excitement over a glass of wine later that night.
I walked into the general surgeon’s office. I was greeted by a nurse named Kim. She was very concerned about me and gravely asked how my day was. I cheerily replied just fine, slightly wondering what the heck was wrong with all of these people. I sat in the exam room on the table looking at my mom, dad and both step-parents. A very rare occurrence for them to all be in one room. For that, I was truly grateful. In walked the doctor and shook my hand. He too asked how I was doing. I gave him the standard reply that I handed out to everyone that day - I was fine. All I was really thinking is that I would be fine as soon as I could get out of there and get home to go to sleep because once again, I was beyond exhausted.
Dr. Brannan (who would ultimately go on to perform three different surgeries on me before my whole ordeal was over) told me the tumor I had was lymphoma. I thought I was smart and asked him if that was benign or malignant. He answered all lymphomas are malignant. I quietly sat there a bit stunned not able to find a reference or a space in my brain to process this. He seemingly knew I was struggling to get this information past the walls of my 25 year old brain. He said the good news is that we do have medications to help deal with lymphomas today. “Oh cool!” I thought. I didn’t like to take antibiotics but I would do it this time if it meant me and my family could just go home. I asked what the meds were like. He responded, “It depends on the type of lymphoma you have. We are going to need to do a biopsy to learn more. But it will be chemotherapy or radiation or a mix of both.” Excuse me?! What?! I had been sitting on the exam table with my legs dangling down, leaning forward with all my weight on my wrists…my arms buckled. All I could muster to say to him in a very calm and monotone voice was, “I am so sorry, I am freaking out.” He told me, have you seen your scans? “No,” I replied. He walked me down the hallway to show me. There on the wall was a back lit image of a chest cavity. The chest had a huge mass on the left side. It was my chest. Mine. Oh my God? I was so humbled, and scared, and shocked, and nauseous. I kept it together for everyone around me. I still had to go home and now face my husband of three weeks and tell him the news.
I was at my mom’s house and my husband and I sat upstairs in the bathroom that was attached to my old bedroom. We both knew these spaces well. At 25 years old, I had already known my husband for 11 years; we grew up together. I told him the news and to be honest, I truthfully don’t recall much of what I said or how either of us responded. It was just shocking to both of us.
The next bit of time was filled with talking to my friends and other family members sharing the news. First came my grandmother Omi. Omi was my rock, she is one of the most important, special people in my life. To even think of telling her this news was heartbreaking, but her response was just as heart wrenching. She cried and cried and just kept repeating, “Not my Kimbo, no not you.” It was terrible. I didn’t want to hurt her but I didn’t really know at the moment how to take away the diagnosis. I promised her I would be fine, desperate to feel like I wasn’t lying.
I then told my college roommate Sallie, that I couldn’t attend her wedding and the reason. She lovingly hugged me and understood. I was so worried she might be mad at me for being a bad friend. She gave me a journal to log my thoughts of my upcoming journey and meaningfully told me that she would be there with me every step of the way. She had apparently known before me that what lie ahead was going to be quite a battle. Of course, she absolutely was there for me the whole time. I began to tell my closest friends, my bridesmaids. They rallied for me in the most unbelievably loving ways. We were all so young and clueless about the tough cards that life could deal, none of us even had parents that had any major illnesses.
My friends organized dinners for me, I received hundreds of thoughtful cards and letters, care packages came in filled with items that might occupy me during treatments. I sat at chemo treatments with standing room only during my eight-hour sessions. Friends flew in from out of town to hold my hand over the course of the months I would endure chemo. I even stepped out of the hospital after a four day stay to join the annual Light the Night in Tampa. I was greeted with literally over a 100 people that had come out to join my team. Yes, it was my friends and family that showed up, but also so many that had never met me. My youngest sister’s youth group came to support her, my parent’s friends were there and hairstylists that had shaved my head all came out to walk with me. I would later be named Fundraiser of the Year for LLS - an honor that I did not singlehandedly earn. The love and support I received no doubt had a huge impact on my attitude and eventual cure.
After my biopsy and the days of waiting that followed, I was given a diagnosis of Stage 2B Hodgkin’s Disease. I would receive 12 rounds of eight-hour chemotherapy (AVBD) treatments. The treatment was extremely hard on my body from the very beginning. My oncologist told my family in private so I would not hear that I received almost every adverse effect possible from the protocol. Between the lines of this story are so many micro-stories of handling sides effects, heroic nurses and staff that stood by my side, the brave and often emotionally drained caretakers that represented my parents, sisters, extended family, friends, community members, and no doubt strangers I have never met. I learned so much about myself and people during that time. I learned that we can all be pushed well beyond what we think we can handle. I learned what an amazing community I was a part of. I learned that life is so precious and to never waste a day. I learned that when faced with your own mortality you can experience love and thankfulness beyond measure. I learned that I could feel indebted to people that had lost their lives before me. If it weren’t for the thousands of people that had died from Hodgkin’s disease before me, I might not have my life today. Because of them, research and dollars poured in to find a better treatment for a disease that I would later get. These are people I will never meet but I know them in my soul and I am grateful. When I think of them I am reminded that my life is not an accident, and it is my duty and honor to give back in their name.
What I hope you can take with you from this story is that you should always pay attention to your intuition, listen to what your body is telling you, and when in doubt, practice gratitude.
Please keep an eye out for my next articles, which will examine chemotherapy and radiation treatments, the importance of complementary therapies, and the process of living in remission.
Kimberly Lackey is the Founder and Integrative Health Coach of EMPATH Coaching. She works with individuals, groups and children to help build a life they love, both mentally and physically, through integrative health coaching, nutritional counseling, motivational speaking and more. To connect with Kim and learn more, visit http://www.empathcoaching.com or contact her directly at Kimberly@EmpathCoaching.com