Diane King: In Her Own Words

Isn’t it interesting how one remembers the date? Mine was Jan. 11, 2011. I hadn’t been feeling well for a few months, and a lymph node in my neck was continually swelling. On that date, however, I had a CT scan for a suspected kidney stone. My doctor called with the results. When I answered the phone, I immediately sensed there was something wrong… something more. Then, in a conversation packed full of content, all I heard were three phrases:

“Your abdomen is full of extensively large lymph nodes.”

“It looks like you have lymphoma.”

“We need to get you to an oncologist immediately.”

Up to that point I had very little experience with cancer. I was 45, vibrant, fit, athletic and at the peak of my life. There was no history of cancer in my family and the generations before me lived healthy and active lives well into their 90s.

So, with very little knowledge on the matter, when my doctor said lymphoma, I wasn’t even sure what it was. And an oncologist, I thought—isn’t that for cancer?

By the end of the call I understood what it all meant. What a difference a day makes. One day you don’t have cancer, the next day you do. And the journey begins.

The next nine months were spent trying to figure out if indeed I did have cancer and if so, what kind. Lymphoma can be difficult to diagnose. My biopsies were either inconclusive or benign. Then finally, after the disease continued to progress and another excisional biopsy was taken, cancer was confirmed.

I had another date: Oct. 31, 2011. I was told I had follicular non-Hodgkin’s lymphoma, a cancer that has no cure but is treatable. Treat it and it goes into remission, but it will come back. Each time it returns, the drugs used for treatment are different than the last. The final treatment option is a stem cell transplant.

For days and days following my cancer diagnosis, I just wanted to go back, back to before cancer. With immeasurable sadness and heaviness in my heart, I ached to return to my normal life. The cancer journey is far from just physical. It’s not only about science and the body, it’s also about the heart and the mind, for which there is no treatment or infusion.

Along the way I’ve discovered some truths about life and my cancer journey. Some lessons learned. With the experience and knowledge I’ve gained, I’ve come up with some sayings, mantras and stories to help me navigate this road. I call on them when I need to manage the fear and anxiety, or when I feel such deep gratitude and profound joy to be alive and well for another day, or when I’m just telling others what I’ve gained along the way.

 

I’m so old, but I’m so young!

Before cancer—“B.C.” as I call it—I would say, “I’m getting so old. Can you believe I’m 45? I’m so old.” Then one day I was told I had cancer, and I said, “But, I’m so young!” It’s all a matter of perspective. Now, each and every birthday is a grateful celebration. I recently turned 50 and we had a big party with family and friends. A huge celebration! Not everyone gets to be 50. It is a blessing and an honor to be 50 years old.

 

Calling all angels

Soon after I was told it was likely I had cancer, tests and painful procedures were ahead for me. I was still in shock with the possibility of cancer and nearly paralyzed by fear. Many friends and family had reached out to offer help and one day I needed it. I was getting ready for a test appointment and it seemed I was running out of brave and strong. One of my favorite music groups is Train, and one of their songs is “Calling All Angels.” In this particular moment of need I sent a text to all those who were offering support, calling all angels. I asked for positive thoughts and prayers. I needed strength to get through this.

Within seconds the replies started coming in. The responses came so quickly and were so numerous that I couldn’t read one before the next had arrived. So many texts of encouragement, support and love poured in. Somehow that energy was transferred to me and I was filled with the courage and strength needed to get me through that moment. That experience changed me. I now understand that I’m not alone in this. I have support far and wide.

 

Life’s a gift, not a given

I always thought old age was an automatic. It never occurred to me that I wouldn’t live well into my 80s. My genes were programmed for old age, with no disease or cancer in my family. All I had to do was stay safe, avoid any accidents and I would likely see 90.

After being diagnosed with cancer at 45, now I know—life is a gift, not a given. Our days aren’t promised. We don’t get 90 years and if we don’t make it, then we’re short-changed. No, it’s the opposite. Each day we live is a gift. It’s an additional day to our lives. We aren’t guaranteed a certain amount, we’re given another day!

 

Find the good

It may seem with a cancer diagnosis that little or no good is to be found. As I began to move through the early stages of my cancer experience I thought, “I’m going to try to find some good in this.” No doubt cancer is horrific and tough, but I cannot believe how much good I’ve found throughout this journey. Things like the love, kindness, compassion and support from others. The change in one’s perspective on life, greater appreciation, new understanding and clarity. The profound science and medical advancements in cancer treatments. The commitment and genius of oncology professionals and service providers. Cancer organizations raising awareness and funding research for new treatment options and cure. Opportunities to provide empathy, comfort and support to other cancer patients and their families. Find the good!

 

Build your team

You’re fighting for your life. Build your team and be an active participant on the team. Vanderbilt-Ingram Cancer Center is one of the best places to start. Make sure you and your doctor can communicate effectively—there’s a deep trust in her or his knowledge—and you’re comfortable with your doctor and her or his support staff. Ultimately, this is your life, so participate and be engaged in your care.

 

This has got to be about you

Soon after I was diagnosed I was talking with my sister. She said something to me that changed my whole approach to my treatments and cancer experience. She told me, “This has got to be about you.” She knows me well enough to know that I would be thinking about what’s best for others, what someone else needs, what he or she would prefer. She said, “You’ve got to make decisions during this time that are based on what you need and what’s best for you.”

She gave me permission to put myself first, and then I gave me permission to put myself first. If I didn’t feel like company, then no company. If I didn’t want to answer the phone, then I let it go to voicemail. If I needed to rest, then I rested. You have to set yourself up for the best chance of healing and surviving. Do what’s best for you. You are allowed. You have cancer.

It’s not about the dying; it’s about the leaving.

So, fear was what came first for me. The fear of dying. During the time I was mentally trying to process a cancer diagnosis it occurred to me that it’s not about the dying, it’s about the leaving. I don’t want to leave. I’ve finally found the love of my life, we have our beautiful home, we’re traveling, I love my work, I’m blessed with amazing friends… I can’t bear the thought of leaving.

Sometimes I just need to speak openly about the reality of having cancer. The fear and anxiety it brings, but also the utter joy and heartfelt appreciation for life, loved ones and experiences. I recently asked my life-partner what she thought she would do if I died from cancer. What would her life be like? I needed to know. It’s difficult to talk about and culturally we avoid it, but for me I need to be able to talk about the hard stuff.

 

I may die from cancer, but NOT TODAY!

As of today, my type of cancer is incurable. It will come back. I heard someone describe this as “haunting,” and that is exactly what it is. Haunting! I am haunted by my cancer. When will it come get me again? This creates a lot of anxiety for me. One day I was quite weary of the haunting and I said out loud, “You know what—I may die from cancer, but NOT TODAY!” So, now I use that. When the haunting and anxiety begin and it’s robbing me of the present, I make my stand and say it out loud, “I may die from cancer, but not today! Not today!”

 

And now I have another date: Dec. 31, 2014. My cancer has returned.

I’m learning a whole new set of lessons this time. Mostly, this is how it is… this cancer is not going to be cured and it will continue to come back. I will spend the rest of my life treating and managing this cancer.

And I’ll tell you, at the moment I’m not very happy about it. I’m quite angry. But, that’s part of the process. As I said before, this journey is not just about the physical, it’s about the heart and the mind as well. Certainly I will have some new truths and insights from this second round, but I’m also bringing with me a skill set I didn’t have the first time.

Now I know to call on my angels; find the good: it’s got to be about me; life’s a gift not a given; I’m still so young; to speak the hard truth; and I may die from cancer, but not today! Not today!