“I Can Sleep When I Am Dead” Was The Wrong Approach To Life
Sitting in my hospital room, infusing with chemotherapy, you have to wonder how my life ended up like this. It all started in 2018 with a cough and cold that would not go away. I had just started dating my closest friend and things had finally been on the up and up. In 2017, I had struggled with my marriage and for various reasons, my husband and I decided to divorce. The grief of coming to terms with this was like a death I had never felt and it took a toll on my health. As time passed, I had started to feel more grounded but my bad behaviors of work hard, play hard had already started to do their damage. I had been stressed from the divorce, and my new life of trying to settle into motherhood, dating life, and work life. My motto was "I can sleep when I am dead." Little did I know, that was the wrong approach to life! I will die without sleep and I was not taking care of the vital things my body needed.
I soon learned that sleep and relaxation would be key productive work to my healing process.
I had always viewed sleep and relaxation as unproductive time. I was never really accustomed to taking time out for myself as I felt this was just me being ‘lazy’. A word I had been plagued with all too much in my past, it was something I never wanted to be attached to. However, I soon learned that sleep and relaxation would be key productive work to my healing process. Taking time for yourself was not lazy but ensured you are stronger in the end.
In the winter of 2018, I was going in and out of my primary care doctor’s office, trying to figure out what was going on with my health. I was continuing to feel sick and at that point, I was worried because I realized this was something more serious than the flu. My weight was at an all-time low of 114 pounds, sometimes when I coughed I threw up, and I was having regular night sweats. Oh God, what do I have! After a panel of tests to check for everything under the sun, we were down to either Tuberculosis or Lymphoma. At that point, neither sounded good, but I was praying to God for TB because the last thing I wanted was cancer. I was 35 at the time, co-parenting two children, had a great job and had a new relationship. The last thing I wanted was cancer.
At that point, my friends and family had started to surround me because, although we did not want to admit the truth, we all knew that my diagnosis was likely going to be cancer. On January 4, 2019, while working at one of my clinics and in between meetings, I received the news from my surgeon that I had Hodgkin’s Lymphoma. That afternoon, I met with the Medical Oncologist that would order my PET scan and work on staging my cancer and preparing for treatment. The next few weeks were a blur, but before I knew it I was starting ABVD chemotherapy. One week on and one week off of chemo became my pattern for the next six months. On chemo weeks I was cared for by the most amazing people, during my off weeks I was back to work, mothering, school functions, errands, and sports. Regular life as much as you can consider.
The Care Team
There are no words to say how thankful I am and how blessed I am for the people in my life that have dedicated their time to help me through this. When I was first diagnosed, I decided that at that time I had to give up the hardest part of my personality, my tough outer shell, and agree to accept help. I had to be, dare I say it, vulnerable. Because I could in no way face this by myself.
I remember telling my best friend, Jen, when she asked, ‘what are you going to do?’ I said, without hesitation, I am going to "Get Grace". This was twofold, I needed to reconnect better with my inner faith and for some reason felt compelled to connect with Grace, one of my employers Health Coaches. During my first meeting with Grace, I learned why I had been led to her, unknown at the time. I learned that Grace is a survivor of Stage 3 Hodgkin’s Lymphoma. When she told me this I broke down crying, something I would often do because I have cancer and you cry a lot. I could not believe that the woman that I felt I needed to guide me through this as my health coach is 3 years in remission of the same diagnosis I am now facing.
The biggest advice that Grace gave me was to get a care team to help with this. Cancer is too much for one person to bear and you need an army to fight this. Over the next couple of weeks, Grace helped coordinate a "Share the Care" event in partnership with my friend and RN Care Manager, Missy. One Saturday in between my treatments, a group of us all convened and shared our feelings about what I was going through and how everyone could help. And then somehow by the power of grace, it all started. Teams of two, a total of 8 people became my hero’s. They each took treatment numbers 4-12 and led the group. They made sure I had meals, rides, someone to sit with me during treatment, someone to stay with me at the house, and that my kids were cared for. These angels are Ryan O’Hara, Kathryn Feuquay, Melissa Pannone, Celeste Scalf, Keli Openshaw, Tasha Vigil, Marie Stinebuck, and Cristine Currie. This care team also coordinated with my brother, my mother, and my best friend Jen who would travel the country every three treatments to be with me. Just as attached as we were when we were kids, Jen and I would reunite in the most critical moments of our lives. It was as if we were going through my cancer journey together.
Losing My Hair
I wish I was one of those women that could say: take that cancer, I never really liked my hair anyway. That would be a complete lie. I am a natural redhead and had long beautiful hair that had really been a part of my identity. As a child, it was difficult to look so different than the rest of my friends. I was tall, pale, freckled, and had red hair. But as an adult, I really gained confidence in standing out and accepting my looks. I found beauty in my hair and being unique. Now with cancer, I still struggle with my appearance. Prior to treatment, I got a cute haircut to prepare for my hair to fall out, and as it thinned I created looks with scarves to make it work. I shaved my head a couple of times during treatment to take ownership back of my hair loss. However, I struggled because the person in the mirror is no longer what I recognized myself as. I am this new being, alien-like and sick. When you are bald, the reality sets in, I have cancer and now everyone knows. I continue to be bald, but I can only dream of the day when my hair will grow back. I promise to never complain about a bad hair day again.
Living with Cancer
It was summer when I finished my ABVD treatment, my hair had started to grow back and I finally had clearance from my oncologist to travel on a plane. I was taking the kids to Maryland to see Jen and her family and to Georgia to see my brother and his family. This was a healing trip for the kids and me, our annual pilgrimage back home. On July 18th, my daughter’s birthday, I received news from my PET scan that although my cancer was looking better, it had not gone away. My lymphoma was now considered resistant to treatment. What does that mean? My poor daughter, I had just received the worst news on her birthday…surprise… mom still has cancer. However, the trip must go on.
I took a break from the news to center myself and determine how I am going to go on with the cards that I had been dealt. In came Grace, this time she recommended I read, "Crazy, Sexy, Cancer" by Kris Carr. Traveling on the plane to Maryland, I bawled my eyes out next to my kids attached tightly to their headphones as I read about other women living and thriving with cancer. On this trip, I connected with Jen and Brad to determine that living with cancer would not be a death sentence, but something I may have to learn to manage to add the years to my life that I need. In talking to Jen’s mom, I received the right advice that I need to be a strong advocate for my health and I need to fight for my life. I needed to become an expert on my lymphoma to ensure I get the best care that is needed.
Once I returned home, I quickly started second-line chemotherapy and started doing my homework on the Hodgkin’s Lymphoma experts. This took me to three different hospitals where I interviewed each doctor, and in the end, I found Dr. Rosenthal at Mayo Clinic Hospital in Scottsdale, Arizona. After I left the room, I had an overwhelming feeling that this woman was going to save my life. I learned more about my cancer and how it may have been resistant to initial treatment. I learned that I have plenty of options for treatment before we have to consider more serious problems. The goal was still to cure my cancer and I was ready to fight. After two treatments of ICE therapy, my PET scan came back clean. That means because my cancer is resistant, I would now be going for a STEM cell transplant.
As I planned for the big journey, treatment plans quickly evolved. I would be going to Mayo for a slew of appointments to prepare for a three-week hospital admission, followed by two weeks of living near the clinic for outpatient monitoring. That meant, my home would need to be in Scottsdale for the next month and that I would be leaving my children for a long amount of time. Leaving my kids is by far the hardest part of this ordeal. I can handle just about anything but leaving my kids for the hope that I can live a life with them again and have more years after my treatment is the biggest test.
However, I am doing it. I am almost complete with my heavy dose of chemo treatment and living a quiet life inside my hospital room. I am confined to only my unit, which is a small circle of 8 rooms that I can walk around. I am attached to my IV pole at all times and am required to rely on my nurses many times throughout the day for vitals, bathroom, and fluid monitoring.
I thought about writing as an aftermath to say I am in remission, but I have found that word to be confusing and often no longer applicable to so many people living with cancer each day. I am a survivor, each day I wake up and put one foot in front of the other. I am blessed that God has given me the time that I have on this Earth and I have a new perspective on the healing process and the value of the life we have. Cancer helps center you, you stop complaining about the little things and you learn to appreciate each moment that you have because you don’t know how long you will have those moments. I am blessed for my children, their father, and his wonderful family. I am blessed for Ryan who has stayed with me throughout this entire process, dedicated to fighting with me. I am blessed for my best friend Jen, who miles away I still feel just as close with as when we were kids. I am blessed for my Triple T team, they have carried me so many times in this race, encouraging me to keep fighting.
Photo courtesy of author.