I am Stephanie, a myeloma survivor from Edmond, Oklahoma. I am married to my husband, Lee, and we have a nine year old daughter, Harper, and seven year old son Gunnar. We also have three dogs: a 13 year old mini doxie, Luna, a five year old schnoodle, Mable, and our newest addition, 10 year old mini doxie Herman. I inherited him after my grandfather passed last November. It’s been interesting. He pees on everything!
Before getting diagnosed with multiple myeloma, I did everything. I was super-mom, I worked part time in my husband’s chiropractic office, I worked part time as a health coach, I volunteered at my kids’ school, I organized bunko parties… I had a FULL adult and kid social calendar. I also had dinner cooked and on the table every single night, no matter what. Eating in front of a TV was not an option. Ever. And I did it all in so much pain that I was having trouble getting dressed by the time I was diagnosed.
My husband and I are small business owners so I never accrued PTO (paid time off) or sick leave. This is something I wish every business owner out there would consider. Disability insurance can mean the difference between keeping your office open or closed. Don’t be stupid like we were. Fortunately we have family that stepped in to take care of the kids while I underwent treatment, but that was not in any way ‘paid time off’. It was an immediate loss of income.
That super-mom left when I was diagnosed. During treatment she simply did not exist. I spent so much time away from home and when I was here, I was so very sick. Being mom just wasn’t in the cards for me in 2014-2015. I couldn’t cook, I could barely even stand the smell of food. It was like being pregnant but so much worse. All I could do was watch Netflix, Amazon and HBO Go shows, write my blog, and feel horribly guilty about the terrible mother and wife I believed I’d become.
Today, Super Mom is definitely not back, but I might have found Complacent Mom during the maintenance phase of my treatment, which I’m now about half way through. She’s at least a few steps up. She occasionally cooks. Hardly ever eats at the table (but at least we use Wheel of Fortune as spelling lessons), makes checklists found on Pinterest (but rarely follows through), rewashes the same load of laundry sometimes up to four times, then finally takes them out and puts in a new load to start. I don’t know why I do this… It’s the chore of folding and putting up laundry. The absolute bane of my existence. I even volunteered as my daughter’s home room mom this year (which was a mistake, especially now that I’m on IVIG for my immune system). I’m trying, I know I’m trying, but I also take a very deep breath when they leave for school. And, yes, I feel terribly guilty for it.
This is my job right now. Trying to get back to wife and mom, and all of the life in between. And trying to do that while struggling through weekly Dex, Kyprolis infusions, daily Revlamid and monthly IVIG and Zometa.
My Path to Diagnosis
I think we knew I had myeloma a few days after Christmas 2013. I wasn’t diagnosed, officially, however, until January 2014 by Dr. Abby Bova at Mercy Hospital in Oklahoma City. She immediately referred me to Dr. Bart Barlogie at UAMS/MIRT in Little Rock.
So what were my symptoms leading up to diagnosis? This is a very hard question to answer. I have a four-inch binder of six years’ of medical tests, doctors notes, labs, etc. The first thing I remember noticing for sure was what I would call ‘muscle weakness’ in my arms after the birth of my son. Around that same time I had labs that showed elevated calcium for several months. These numbers were followed, but eventually went away.
Over the next several years, my muscle weakness became more severe and more painful. From about 2010-2013 the pain I felt was all over, but it was not diffuse. I could point to a spot on my body and tell the doctor, ‘it hurts so badly right here’ but move my finger an inch to the side and say, ‘but there is no pain here.’ And those spots were everywhere.
Then in 2013 I was at the gym and felt a painful pop in my chest while I was doing an abdominal resistance exercise. I had enough pain that I wasn’t able to lift my arm or lean on my arm for several weeks. It got better so I started working out again. One afternoon I was doing stretching excercises in my bedroom, and my kids were watching TV laying on my bed. I remember it like it was yesterday. I did a slow roll from my hips to my shoulders until my back was flat on the floor. I know I saw my kids faces before my own pain registered. The pop from my rib breaking was so loud both of their heads swung at once to look at me. Without breathing I managed to tell my daughter to get the phone so I could call her dad before I broke down in front of them. That break, which was actually the second or third, but most severe, was the beginning of my downward spiral.
Doctor visits became fast and fierce at this point. Strangely, nothing showed up on X-Ray. I had at least two rib fractures at this point, and come to find out later, my body was riddled with so many lesions my bones looked like Swiss cheese, but NOTHING showed up on MULTIPLE X-rays.
This was right around Thanksgiving. Several months prior we had planned a trip with friends. I was not going to allow some mysterious pain, no matter how bad it was, keep me from traveling, especially to Costa Rica. Little did I know that this would be the last time in my life that I could be the carefree person I have always been. The adventurous spirit ready to take down a mountain just out of curiosity to see what’s on the other side. Looking back, I cannot believe I zip-lined through the jungle with multiple broken ribs and a large plasmacytoma in my sternum!
Christmas came, and with it, elementary school Christmas parties. My daughter was in the first grade, and my son, who was in pre-school, and I went to her class lunch party. So that he wouldn’t feel left out, I took him to Chick Filet afterwards for a lunch date. When we were leaving, I pushed open the door to go to the car and felt the most excruciating pain in my chest that I’ve felt in my life. It’s true when people say that you see stars when pain is bad enough. And that’s all I could see. I reached for my son’s hand and stood there for a minute. For some reason, all I could think of is that I had to get us to the car. I managed to get us both buckled in, I called my husband and told him something had happened. I looked at my chest and didn’t think I could see anything, but I could FEEL something. Over the next two days a deep pain began to radiate from a central spot in my sternum, and something told me I needed to get to the ER. I drove myself to the hospital the afternoon of December 27, 2013.
I was sitting alone waiting for the PA to come with the results of the CT. I watched her walk in with a xeroxed copy of what looked like my collarbone and something else that, whatever it was, didn’t look right at all. Her first words were, ‘I’ve called your doctor. He’s leaving his son’s basketball game to come and talk to you.’ Um. Yeah.
She tells me that I have a large tumor that has caused multiple fractures in my sternum. That would be where the stars in my vision came from. I asked if that meant I had bone cancer. She replied that it meant I most likely had breast cancer that had metastasized into my bones, you know, given I’m only 35 and female.
I took the xeroxed copy of my sternum, told her to call the doctor and tell him not to leave his son, got in the car and called my husband. He was fixing our kids dinner when I told him that his 35-year-old wife, mother of his children, and partner in life had a giant tumor in her chest.
(As a side note: In 2010 I found an axillary lump and immediately had it checked. I had reconstructive breast surgery as a young woman for a congenital deformity and had silicone implants placed in 2001. I learned that at some time in the past, the left had ruptured. Unfortunately, I had the ‘old style’ implant and the silicone was free-flowing. I’m not writing this to get this debate started again, but this could be considered a symptom. I’ve talked to several docs about this and they all say the same thing. The research does not support it, but there are a lot of women with them.)
When I was officially diagnosed with myeloma, I had never heard of it before. When my primary care physician called to give me the news after the preliminary labs were done, she said there were three possibilities, from best case scenario to least, in her opinion, with none being good: 1. Solitary plasmacytoma, 2. Breast cancer 3. Multiple Myeloma.
I went through Total Therapy IV at UAMS/MIRT. Anyone that knows anything about that protocol knows how brutal it can be. And, wow, it was brutal. I spent nearly a year sick, sick, sick. Don’t get me wrong, though. I wouldn’t change that for the world. That treatment put me in complete remission, MRD negative, and in line for the cure. And YES, I’m one of those! I do, without a doubt, believe myeloma is curable and we are curing patients as I write this.
I was taken off of Total Therapy IV protocol when we determined I carry a mutation of the P53 gene, as well as some other unfavorable markers. My maintenance chemo was changed to reflect these more aggressive markers. I was taken off of the traditional RVD maintenance, put on Kyprolis, Rev and Dex. I also have zometa and IVIG infused monthly.
Coping. Life beyond diagnosis
During treatment I felt extremely isolated. Again, maybe it’s because I was so social before, or it is because of my age– but isolation caused me a great deal of anxiety even though I was essentially bed-ridden for 11 months, and not even in the same state as family and friends. I’ve always loved writing, so I started a blog during that time: www.myfearlessjourney.wordpress.com. It was a way for me to keep everyone updated on my progress, but also a way for me to safely get my emotions across. I’ve found it difficult to keep up with it since the hardest part of my treatment is over, and I’m not sure why. I do regret that I stopped writing. I would recommend everyone going through treatment find an outlet like writing. It’s absolutely necessary for mental health.
I deal with challenges as they come. I have kids, so challenges are unpredictable. We try to travel and build memories as much as possible, and traveling is a huge challenge. However, in the three years since diagnosis, I’ve been to New Mexico twice, Hawaii, Disney, Missouri twice, and Texas. And trust me, I’ve been pretty darn sick on several of those trips. We make the most of every opportunity. I want my children to remember how hard I fought to stand.I will say this: If I didn’t have young children that I must get up for, every single day, that I must put on a smiling face for so that they aren’t afraid, I think I could easily slip into despair very quickly. Having myeloma with young children is a blessing and a curse. They make me fight harder than I would otherwise, but I think, at times, the fighting can get too overwhelming.
Of course, another huge challenge is the drugs we take. I’ve always been a more ‘natural living’ person, and getting used to the idea that toxins are buying me time, when toxins most likely caused this mess in the first place, has been tough. It’s a constant internal battle that my mind plays over and over. Am I doing what is right? Am I doing more harm? If I wait for a short time will something less toxic come along, or will that use up all the time I have left?
Then, of course, there’s the Dex. Since most of us are on Dex, I’m assuming most readers know exactly what I’m talking about. Dex days have taken the place of PMS in my house. If I’m in a mood, don’t you dare ask me if I’ve taken Dex today. Lighting just might spark from my fingertips and fry you where you stand! Well, not really, but I might wish it for just a sec.
The side effects of treatment
My menstrual cycle stopped after my very first dose of chemo. No one prepared me for what would happen to my body, and as a young, married, sexually active woman, that makes me so angry. On my journey, I have met so many other young women that have gone through the same thing and nobody’s talking about it. Why?
Chemo threw me into a post-menopausal nightmare in one month’s time versus a decade. Who in their right mind would not think to prepare young women for that kind of shock and what to do about it? Not to mention the poor husbands. Mine deserves some kind of award for most patient man of the year.
And some advice from a fellow survivor…
Surround yourself with people that feed your positivity. If your life is filled with cancer, cancer, cancer, that is all your life can be.
Our fight is so hard, and in no way do I mean to minimize that. I’ve read so many of those words of wisdom on Faebook that talk about how hard it is when people only notice how well we look when we are so sick. While this is very true, if we constantly search for recognition of how sick we are, how can we expect to get better?
If you have to fall asleep at 7 pm to be coherent the next day, don’t beat yourself up too much for it. Know that there are a lot of us out there that fall asleep after Wheel of Fortune, too!
I try not to think about ‘the end’. I believe in self-fulfilling prophecy, so I think your ‘the end’ is what you make it.
Sometimes the fight isn’t for you. Sometimes it’s for the people around you. Surprisingly, I’ve found that I fight harder for them than I would ever fight for myself.Post diagnosis, I don’t worry so much about what others think about me. I know what kind of person I am. I try as hard as I can, I struggle, I fall, but I haven’t given up. I know what kind of person that makes me. And above all else, I love my family and my God desperately.