“I just want people to know that when they say you have cancer, they are not saying you have a death sentence. You can still live and you can live well.”
Hello, I'm Sally Kalksma. I'm a multiple myeloma survivor. I feel I had multiple myeloma, it didn't have me.
I was diagnosed 11 years ago in the smoldering stage. And those three words “you have cancer” is, as I say, three of the most shocking words in the world. The other ones are “I love you.” Both of those words can change your life. I love you, you have cancer.
So, my whole world was turned upside down just like anybody who's diagnosed but thank God I was in the smoldering stage. However, I never heard of multiple myeloma before I was diagnosed with it. So, I did lots of research, not just on the type of cancer but the type of treatment and who the best doctors in the world are in multiple myeloma. And thank goodness I live very close to the metropolitan area — halfway between New York City and Philadelphia. And I went for three opinions. And one of the doctors wanted to start me on chemotherapy right away. He said, Wow, you're healthy. We're going to do chemo to you. And I'm like, “Well, if I'm so healthy, why are we going to do chemo?” And I continued to get other opinions and I had to wait three months to see one of the best in the world and every second was worth it.
I met up with Dr. Edward Stadtmauer at the University of Penn that December, three months after I was diagnosed, and he looked at me and he said, “You're beautiful. Your blood is beautiful. I am not touching you until your levels get to a certain stage.” He goes, “I'm going to watch you very carefully every three months. You do have a little hole in your hip that could be from where the multiple myeloma has pulled and started to eat away. There's different treatment options for that. Not chemo, but a bone filler.” And I looked into that, and he and I both agreed. I didn't need it at this time.
So, thank goodness I went with Dr. Stadtmauer because five months after I was diagnosed with cancer, my husband was diagnosed with cancer. And it wasn’t his first; he's had seven different cancers in his lifetime. However, this one was very aggressive. We found out he had a genetic disorder that cause different cancers. And he passed away within eight months.
So, my life was not just turned upside down, but I was like, in the tumble of like the washing machine cycle. I had this amazing part time job. I had this amazing life, you know, raising my three children with the husband I loved. I worked for the borough of Palm Beach where I facilitated events. I was a race director, of one of the largest 5Ks in New Jersey. But then after my husband passed away, I had to go back to work full time. And I realized so many women do this. And my hats go off to them as a single parent and not a single parent with you know, divorce, I mean, totally sit single with no spouse, and I became my children's mother and father.
And I went back to work full time and I was managing my own diagnosis at the time. And I had all this built up anger in me. And I took it out the best way I knew how and that was to work out. I was a lifelong runner, however, I didn't have time to run because I had to be with my children after work. So I ran up the stairs at lunchtime at work. I worked in the basement, and I felt like a caged animal. So at lunchtime or right after work, I’d do a stair workout.
And the multiple myeloma Research Foundation found out about this. And they invited me to the prestigious Empire State Building run up to be part of their team. And I fell in love with stair climbing and two things saved me: stair climbing and the multiple myeloma Research Foundation. I met a wonderful group of people who I had become really good friends with. The resources they have available just has helped me so much cope. And not to mention all the drugs that they have brought through FDA approval. And my stair climbing I met a great group of people. We call each other step siblings because we all run up the steps together. And I took everything out on the stairs.
I felt that is so much more important. I try to tell people, it doesn't have to be stairs, but find something positive when you're faced with adversity, don't turn to drugs, don't turn to alcohol, don't turn to negativity, find something else. And thank goodness, I found the stairs. Because over the course of time, I was hit with more bad news as two my three children were also diagnosed with this genetic disorder and have had surgeries.
I took out my anger and frustrations on the stairs even more. And within five years, I was ranked 20th overall female in the world in stair climbing. So all of this has brought amazing opportunities. It wasn't all bad. Yes, my cancer progressed. As I was getting better stair climbing, it was so strange because my multiple myeloma levels were rising. And right at the height of my stair climbing career, as I'll say, Dr. Stadtmauer said “It's time.” I'm like, “Time?” He goes, “Yeah, you're going to start treatment.” I'm like, “When?” He goes, “Now.” I'm like, “Oh.”
So as anybody who's gone through anything with multiple myeloma, you have heavy duty chemotherapy and drugs — a cocktail of three drugs, along with another chemo before your stem cell transplant and that's what I had to do in 2017 before my stem cell transplant. For me, it worked out fine. I'm still in remission. There is no sign of multiple myeloma in me. I'm watching very carefully. My blood is drawn every eight weeks. I'm like a pincushion – a human voodoo doll. And that's okay. Because all as good.
I am on chemo. I take Revlimid (lenalidomide) every other day, and it helps keep the levels at bay, and I'm good with it. Hey, we're all getting older. We're all on something. Some people are on blood pressure medicine, some heart medicine, I'm on chemo and I'm here and I am loving life.
I just want people to know that when they say you have cancer, they are not saying you have a death sentence. You can still live and you can live well. And that's where I'm at right now.
Check back to see Sally’s next blog on her book about her journey and her advice for others.