Published on January 11, 2018
I wasn't nervous to go see a new doctor. I had heard of a hematologist and knew they treated blood issues. I was there because I had a blood issue: I was anemic. My family doctor had found some levels that were out of range in my labs. I had been getting sick a lot and just not feeling like myself. I had figured I had a 1-year-old son and had not been eating right. I thought I would be told to eat red meat and come back in a couple of months. I never knew a hematologist was also an oncologist. I had made the appointment early in the day so I wouldn't be late for work. Little did I know that I wouldn't be going back to work for a year.
So, imagine, sitting on the exam table and a doctor that you just met tells you that you have a cancer called multiple myeloma. He draws you a picture on the paper that covers the exam table and says some sort of medical mumbo jumbo. He said the word CANCER! Who says that? And he didn't say it with the little whisper that people use when they think they can make it less evil than it is. It was bold and loud. He said I had cancer. He kept talking, and every part of me went numb, including my hearing. The words that came out of his mouth sounded like the teacher from Charlie Brown. All I could think about was “What the heck is multiple myeloma, and when am I going to die? Zach is only a year old, and I'm going to die and leave him. Nick is going to lose his wife and raise Zack all on his own. I had cancer. I was going to die. Cancer?!
How could I have cancer? What the *&#^ is multiple myeloma? multiple melanoma?”
Nobody had heard of multiple myeloma in 2006.
When I was I initially diagnosed, I was told that the average life span with multiple myeloma (MM) was 3 to 5 years. And I was told that if I had not been diagnosed and treated when I was, I would not have lived to see my next birthday. I contribute my longevity to seeking out an MM specialist. When I was diagnosed, I discovered the International Myeloma Foundationonline.
The information line specialist, Paul, gave me the name of a couple of myeloma specialists. I was very fortunate that 2 of them were within a 3-hour radius of my home. I called the Hackensack University Medical Center and had an appointment the following week with
Dr. David Siegel. Had I stayed with the local oncologist who drew me the pictures on the exam table paper, I would not be here to tell you my story.
I would like to tell you that the last 11-1/2 years have been easy and a walk in the park. I would like to say that I had chemo, and I was cured. Unfortunately, MM is incurable. Think of this cancer as something that you constantly need medication for; however, the medication stops working, and you have to try another one and another one. And when those can't keep on top of it, the cancer cells will kill you. By January of last year, I had exhausted every viable option, and the time had come to get my “affairs in order.”
Having a child is one of the most amazing things that will happen in your life. While that little baby is growing inside of your belly, you fantasize about all the life experiences you will have together. You fantasize about all the milestones. You wonder if their first word will be mommy, daddy or even kitty. You think about that first step and which ride on the boardwalk will be their favorite. You wonder if they will prefer teddy bears or Elmo. You imagine dropping them off at kindergarten and if growing up to double digits happens as quickly as everyone says. You wonder if the teenage years will bring the same stress you brought your parents, or will they actually be a good kid. When you have cancer, an incurable cancer, and your child is a year old, you fantasize about being alive to take them to see Santa the next Christmas. Every special moment you have together, you worry if it will be your last.
For all of my son's life, I have felt like we needed to hurry up. We had to hurry up and make moments. We had to pack a lifetime of memories into....? I knew I had a time limit, but I never knew how much time. When he was turning 5, I rented a local pirate ship to have his birthday on. I figured that if that would be the last party I would throw for him, it was going to be an amazing one. I don't even think he remembers it but I do. I have the photos to prove it, and it was pretty awesome. When I took him to the annual Easter egg hunt on the beach, it made me sad, because it could have been our last one. When Christmas came each year, it was bittersweet. I felt like it could be my last one. I have lived for almost 12 years of my son's life worrying about time running out. Time is precious and one of the most important things in life. I felt as if I was using every minute wisely, but it wasn't until I attended a retreat that I realized I was living in the moment but not being present in every moment.
My family and I had an amazing opportunity to attend a Legacy retreat for families who have a parent with a life-threatening disease. The retreat was amazing and free, but I want to share what the true gift was. Not only did we go to Disney, meet other families, and were totally catered to, we were inspired to live with intent and to leave a legacy for our child. I could spend a whole blog on telling you about Deric and Kristen Milligan and http://inheritanceofhope.org/, but I want to share how I was inspired.
When you have an incurable cancer knowing you will die prematurely, and you have a young child that you want to give, teach, show and leave so much to, living with intent causes that all to fall into place. In everything I do with my son, I try to think about what I am giving to him, teaching him, showing him and what I can leave behind for him—mementos, memories and emotions.
Cancer tries to rob you of so many things. It changes your life in negative ways, but there are also some positives associated with cancer. Don't get me wrong, having cancer absolutely sucks, but it has given me a gift that "healthy" parents most likely don’t have. Parents with cancer are motivated, inspired and dedicated on a daily basis to leaving their children a legacy. And parents who have not been on a Legacy retreat may not have the courage to leave one (a legacy, that is). If not for the retreat, I never would have had the courage to sit down and make a video to be seen by my son one day. What child wouldn't like a video message from a parent that has passed away? I wish I had one from my dad, and I lost him when I was 41. My husband, Nick—even though he is healthy—made one, too. Along with that video, I have a whole box filled with messages, cards and mementos for Zach. It is not normal for a 40-something to plan for the unfortunate day that they are no longer here in the flesh. But when you have cancer, it forces you to think and plan differently.
When people hear about what I have endured during my adventure with myeloma, they always say they don't know how I do it. I don't understand why people say that. How can I NOT do it? I am a mom. I HAVE to do it. I WILL do it. I AM doing it. And then, just when I was hopeless and accepted that my legacy box was packed and full, the stars aligned and I qualified for an exciting medical treatment. I'm a miracle. I am still LIVING with myeloma. I am going to LIVE with this incurable cancer until I die.
Living today until there are no more tomorrows,
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