Hold On. I Need to Stop. Why I Relay
“Hold on. I need to stop.”
These words came out of my mouth more than once while climbing Diamond Head during a holiday break in Hawaii when I was 18 years old. I had just finished my first semester of college. I was a swimmer and in the water for hours a day. I ran. I had long hair past my waist. My greatest concerns were maintaining my 4.0 GPA and making sure I had the perfect class schedule.
I had no idea why I couldn’t breathe as my friends and I climbed. It made no sense. I figured I was struggling with the altitude change coming from the flatlands of Florida. I kept taking naps during that trip and finally, when we went surfing on the North Shore I wiped out and took quite a hit to the neck from my surfboard. That night my friend pointed out a lump on my neck. I replied, “Oh yeah. I got hit by the surfboard. My clavicle must be swollen.” But my clavicle wasn’t swollen.
When I returned home to Florida that lump on my neck kept getting bigger. I would wake up drenched in sweat and while at the bookstore where I worked, I collapsed.
Finally my mom persuaded me to get the lump checked out. I decided to go to the clinic at school. The doctor there asked me if I had been scratched by a cat. I explained I hadn’t. He asked if I had been exposed to any odd fungus. That was also a negative. When he suggested an x-ray and blood work I decided it would be best to see my family physician. I still had no idea what was coming.
A day later my mom accompanied me to see Dr. B – a small woman who reminded me of Dr. Ruth, accent and all. She immediately took a chest x-ray and drew blood. I passed out. That was a red flag. I had never passed out from a blood draw before.
A short time later my mom came into the room and told me that my chest x-ray was abnormal and white blood cell count was extremely high. I still didn’t know. It turned out that chest x-ray showed that lymphoma was wrapping around the valves of my heart. That’s why I couldn’t breathe well while exerting myself. It just started presenting itself in Hawaii, by coincidence.
Doctor B referred me to an ear, nose, and throat doctor since the lump presented in the throat area. That was Dr. F. Dr. F was a really nice man. He explained we’d need to do a biopsy. They cut into my neck on a Friday morning and told me to return on Monday. Sunday night I opened The American Medical Association Family Medical Guide which contained self-diagnosis charts. I found one for raised lumps. I ran my fingers along the lines on the page. Finally my fingers stopped: “Consult your physician immediately! This suggests signs of lymphoma, a form of cancer.” I actually felt nothing in that moment. But I knew. I knew. I closed the book realizing what I would I would hear the next day.
My dad drove me to my appointment. I went into Dr. F’s office alone though. He asked me if there was anyone with me. “My dad is in the waiting room,” I said. He asked, “Why don’t we go get dad?” That sealed the deal. My father came in and Dr. F said the words… “You have Hodgkin’s Disease, a form of cancer. The next six months are going to be really hard.”
A few people, even medical professionals told me, “Well if there is a cancer to get, that’s the one.” Idiots. Let me tell you, there is NO cancer “to get.” It isn’t like you won the luck of the draw! Cancer sucks. And there is no way around that fact. I don’t care what cancer it is. There is never a cancer to get.
I shed one tear. Ever the stoic one, my father said, “We’ll fight this.” And that was that. I knew I would. I never had a doubt. I know it’s probably silly, but I think that was the military brat in me. You become adaptable. I adapted. I was tough.
I was referred to an amazing Oncologist. I was the youngest patient he had ever taken on. He called me pussycat and I loved him. Dr. T, he is a hero.When it was time for him to take my bone marrow, he walked me through it as best he could. It was pretty awful. I can look back now and even laugh, though. Dr. T said “It hurts, but I am fast.” After he removed the needle from my pelvic bone he said, “Okay, now I have to make sure I have a good sample,” and showed it to me. It looked like a caterpillar. I asked, “What if it’s not a good sample?” He replied, “We don’t have to worry about that,” knowing I was masking my fear through asking the question in a humorous way.
My first chemo was on Valentine’s Day. It took 16 hours. Shortly thereafter, my port-a-catheter was placed in my chest. My veins couldn’t take the chemo. I hated the port. I hated the scar. I hated the metallic taste on my tongue when they would access it and flush it with saline. I soon learned to suck on strawberry candies during flushes.
Once the port was placed, I took chemo relatively well. But as expected, there were a few hiccups in the road. I had to leave school that semester. It wasn’t easy being an eighteen year old college freshman and having your hair fall out. I expected it would take some time. It started falling out a week after my first chemo session. I still have the first clump I found on my pillow.
There were blood draws, pleurisy, mouth sores, ER visits. My white blood cell counts dropped and then there were the NEUPOGEN® shots. I had to switch extremities every couple of weeks because the needles wouldn’t penetrate my skin after so many injections. The week my counts were too low to allow them to give me chemo, I was devastated. I cried. I felt like my body turned on me again.
I loved my chemo nurse, Cindy; another hero. Just thinking of her still makes me smile all this time later. When she was on vacation, the ‘substitute’ nurse didn’t follow the proper order of administering my chemo agents. There were four of them: Adriamycin, bleomycin, vinblastine and DTIC. I told her what to do. She felt she knew better. That was probably the worst night of all during that time. I lay on the grass before I could even get to the car. I threw up all night. Cancer isn’t pretty.
I slept until the next afternoon. I remember my mom coming in to make sure I still had a pulse. A parent should never have to do that.People in restaurants didn’t want to sit near my table. A former teacher ran into me and reprimanded me for shaving my head. The stylist refused to cut my hair until my mom explained why I was cutting it. The stylist cried. But there were good memories, too. My friends threw small dinner parties. They colored my bald head for the holidays. The ones who couldn’t handle it faded away and the ones who stuck by my side are still in my life. Cancer scares people away or pulls them in closer. You learn quickly what people are made of. You learn even faster what YOU are made of.
After twelve rounds of chemo I was considered in remission. I returned to life as best I could. There would be blood draws, gallium scans, CT scans, x-rays and tests. But no more chemo. They allowed me to bypass radiation therapy. And that was a good thing. A great thing. Life went on. I started to learn how to navigate as a young cancer survivor. I was nineteen years old. Shortly after I turned twenty, my port collapsed. They felt I was in the clear even though it hadn’t been two years and went ahead and removed it.
A year had passed and I went in for a regular pap smear. When the doctor’s office called to tell me to come in, I was concerned. It was non-HPV related cervical cancer. They removed a portion of my cervix and did laser surgery. I was twenty-one years old. That was the summer. I went back in for a follow-up and the P.A. declared, “You look to be completely healed. I have never seen anything like this!” They didn’t require me to do chemo. And just like that, I was a two-time cancer survivor.
A month later it was shocking to end up in the emergency room with chest pains – just like the ones I had before the Hodgkin’s disease diagnosis. I was convinced I had relapsed. Instead I was diagnosed with Acute Lymphocytic Leukemia (ALL). The doctor told me to put my affairs in order. I had gone through chemo and five surgeries. At the rate it was progressing I wouldn’t live to see 22. I protested, “I am 21 years old! What affairs could I possibly have to put in order?” I hated him. I can find no other word for it. I HATED him.
The following months were hard. They were mostly ugly. I choose not to rehash too many details, because it is a time that is difficult to focus on. I lived it. And I never want to forget, but I also don’t want to define that time in my life by it.
It was a fight. I was ready to give up. Then a person in my life at the time told me I was so busy dying I forgot that I was still living. The switch flipped and I found a calling. I knew I needed to speak up. I had no idea what the signs and symptoms were when I was first diagnosed at eighteen. And there I was, 21 years old with a death sentence. Spreading awareness and educating others gave me a reason to fight and fight I did.
At 23, I was declared in remission. A lot of life has happened between then and now. Good, bad, ugly, triumphant, tragic and wonderful. A whole lot of life.
In that time I have never forgotten my fight. I have battle scars, physically and emotionally. There are scars on the surface of my skin from my surgeries. I used to be ashamed of them. Now I am proud. I wouldn’t be here without those scars. There is heart damage, lung damage and kidney damage. No one would look at me and know. There is the knowledge that cancer can come back at any time. There is survivor’s guilt. I have said and written this before: Cancer is my worst enemy and my greatest teacher. For as much as I hate it, I wouldn’t change it. I would never appreciate this life the way I do without having gone through it all.
Surprisingly to me, many people have asked me why I don’t want to just forget it. It is difficult to articulate, but I am going to give it a shot. Many people came before me and fought. They raised money that funded the research that led to my remissions. They spread awareness. They educated others. And I will be damned if they did any of that in vain. It’s my turn now. It’s my turn to pay it forward. I would not be here typing this blog if those people had not given so much of themselves. That is everything to me. Not only is it my duty – because I want it to be – it is my honor.
I have been an active volunteer and participant in the fight against cancer for half of my life, and Relay for Life is one of the premier fundraising and awareness events I have joined in the fight. This year, I proudly serve as the Co-Survivor Chair of Relay for Life – Downtown San Diego. Relay is a 24-hour event. Some are intimidated by that word – “Relay” – they think of it as a run or a race. It is not. It is so much more. It is a celebration, a remembrance, a time to reflect, a time to laugh and a time to cry. Relay involves an easy walk and everyone can do as much or as little as they like. Participants walk in honor of themselves, loved ones and all who have been affected by cancer. We celebrate all survivors and remember those who cannot be with us through a nighttime luminaria ceremony. It is one of the most beautiful events I have attended.
If you are even remotely curious, I encourage you to visit the Relay for Life website by clicking here. Come out and participate. If you are not in San Diego, look up a Relay in your area by clicking here. You can do as little or as much as you like.
If you would like to make a donation, please visit my team page by clicking here. Every dollar counts. I always say businesses like Starbucks succeed because millions of people spend a few dollars each. Don’t think a dollar isn’t enough. A dollar means the world.
It has been sixteen years since I sat in that Emergency Room. I live knowing that cancer will always be a part of my life. I live knowing that I may look “normal” on the surface, but I’ll never be “normal.” And that is okay. I have my health and a beautiful life. I choose to focus on that; on the here and now. I choose to give thanks, to celebrate and to remember. This August 17th I will do just that. I will laugh. I will cry. I will reminisce. I will Love. I will LIVE.
I will Relay.