On Monday, March 12th, 2018, my life changed forever. After an EMG test used to help detect neuromuscular abnormalities of my nerves, by a recommended doctor, she ordered a stat MRI of my cervical spine. Then at 5:00pm driving in the car, on my way home from the MRI, to pick up my mom, who was visiting, and my 2 kids, to drive my mom to the airport so she could fly home to Minnesota, I received a call from the doctor. She explained to me that my MRI showed a tumor, and it was then, when I was diagnosed with a rare cervical primary spinal cord tumor.
At first we did not know a lot about the tumor, what kind it was, the size of it, the location, whether it was malignant or benign, etc. So then started the journey to figure out what it was, and how to stop it from growing and/or spreading.
It started with a 3T MRI to find out it was a 4 and 1/2 inch tumor in my cervical spinal cord around the neck in the C5-C7 area.
After my MRI here in Colorado, and consulting with the Neurosurgeon, they told me they only see one case like mine per year, so I went ahead and did a self-referral to the top Neurosurgeon at the Mayo Clinic in Rochester, MN, close to where my mom and sister live.
So in just a few days, I got myself on a plane, to the Mayo Clinic, met my brother, to attend appointments with several doctors. My condition was worsening quite rapidly, with full body burning from the nerves at the base of my skull. I feel as though I got there just in time. As within days, I was in for a full 7 level Laminectomy, replacing the vertebrae with plates and screws, which would release some of the build up of spinal cord fluid where the tumor resides. Along with that, I had a full neck fusion from C2-T2, along with a biopsy of the tumor (to obtain a sample of the cells) inside the spinal cord, which was really risky.
My doctor was happy with the results of the surgery and knowing that I could still feel my feet. However, now I have numbness from the waist down that may or may not go away in time, and that is from the biopsy. I also found out from the results of the biopsy that my tumor was malignant, which meant that somehow we had to treat the tumor, without removing it, as removing it would make me fully paralyzed from the neck down.
Since the surgery, I also have severe pain in my right hand from where the tumor presses on the nerves and inflammation in the spinal cord area. In just under a month, post surgery, I started 30 days of radiation, commuting from my mom's house, about and hour and 15 minutes each way for a 20 minute appointment.
After finishing radiation and being in Minnesota for about 3 months, I ventured back to Colorado, stayed with friends, as I had sold my house, while I was away with help from my friends and our community, and began to feel the effects of the radiation significantly! Since the radiation was targeting my neck and throat area, I developed a mass in the back of my throat, had to go to the ER twice, and be hospitalized and on antibiotics and fluids, as I could not swallow. The abscess had to be lacerated and drained in my throat, which was significantly painful. At that point, I decided to go on disability at work, as the fatigue was hitting me hard, and I needed to rest more, and not be stressed about work.
Then one month later, I was starting a highly toxic chemo pill. I have finished one cycle and I am on cycle 2. The doctors have told me that I will have to be on this pill, potentially for the rest of my life. And, of course if the chemo pill shows no signs of reduction of the tumor size or spreading, then they will come up with another, what they call, a "chemo cocktail".
After meeting with my main "quarterback" doctor at the Mayo Clinic and presenting all of my past records, it was discovered that the tumor has been there for several years, as they compared my MRI from 2014, and said that it was missed by the Neurosurgeon in Colorado, hence the size of the tumor. And it could have even been there longer, we are uncertain.
I have been told that my tumor is 3cm from my brain stem that causes unconsciousness, and for one to stop breathing, and if the tumor moves down my spine, it would cause me to be paralyzed. My doctors have told me that they will do everything they can to keep me alive.
I am a mother of 2 beautiful, busy, active, children, a son, Teddy, age 10 and in 5th grade and a daughter, Ellie, age 11 in 7th grade. I was stunned and confused, in denial, and scared when I heard the news of the tumor, and that it was malignant, and to some degree I still am. All I thought I needed all these years was neck surgery, after being diagnosed with disc degeneration, arthritis, bone spurs and 2 slipped discs in C5-6 and 6-7, I just thought I needed disc replacement surgery, that's it. And come to find out, that wasn't all I had, there was a lot more to my pain that I had experienced for years, a lot more to my injury, that I thought could be corrected with injections and surgery.
Formerly an avid skier, golfer, cyclist, triathlete, marathoner, hiker and yogi, I am currently just starting to do some PT to continue to use my right hand, and bring some strength back into my legs. My doctors tell me to just keep walking, no cardio, nothing else, just walk. When I get tired, or don't feel well I have a wheelchair my kids can push me in, and I am looking to get a scooter so I can ride it and take our dog Duke on walks and scoot my son to school, when the weather is nice. I continue to stay on short term disability, and may have to go on long term, and am uncertain when I will return to work.
From Team Sara:
We humbly ask for any donations to help. Sara is a strong lady who's world has been turned upside down. And as a single mother of 2 young children we can only imagine the weight on her shoulders. She has had to sell her house and the bills are pilling up. Let's give her the love and encouragement she needs at this time to make it out strong and healthy. Thank you for all your support and kindness!
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