Chelsea’s “New Normal”
Name: Chelsea G.
Type of Cancer: Grade II Intramedullary Ependymoma, C4-T4
Diagnosed: Age 38, 2013
— Categories: Adult Spine
In March of 2013, it was the happiest time of my life. I had only been married eight months and my husband and I were trying to get pregnant with our first baby. We were committed to an intense workout program to get in the best shape of our lives before I got pregnant. We were so excited for what the future held and nothing was going to get in our way.
Onset of Pain
In mid-April, six weeks into our workout program, I woke up one day with horrible back pain. I had called my husband who is a physical therapist, to tell him about my back pain. The pain was coming from around my left shoulder blade and radiated across my entire upper back. It felt like a burning sensation and seemed to be worse at night, sometimes waking me up in tears. He tried everything he knew to alleviate the pain, with minimal success. Then we went to see my family doctor and we were told it’s probably a muscle strain, and she gave me some muscle relaxers. I also went to a massage therapist, chiropractor, and another physical therapist (my husband wanted me to see) that did some dry needling techniques. After three weeks, I finally noticed some relief.
In mid-June, my husband and I were on a short weekend away with some friends when the pain came back with full vengeance. We left our trip early because I was in so much pain. The next day I went in to see the doctor. She didn’t seem to think it was anything other than a pulled muscle. My husband “argued professionally” against this repeat diagnosis. My husband requested and the doctor agreed to order me an X-ray, and put me on some strong anti-inflammatories. The X-ray results were negative, and the new medication wasn’t helping me any better. Actually, I was still waking up in the middle night crying in pain. So back to the doctor again! This time my husband pushed his concerns and made a very strong case using a bunch of fancy medical terms emphasizing that this was not a pulled muscle! My symptoms didn’t seem to match up. He also let her know that we are about to start fertility treatment to try and have a baby and didn’t want to move forward until we knew exactly what was causing my pain. We were tired of treating the symptoms and wanted to treat the problem! So we asked for an MRI. With a little hesitation the doctor agreed.
Diagnosis and Surgery
So a few days later on June 30th, 2013, I went in to have my MRI. We thought they would tell us I had a disc injury or something along those lines. I went in that day by myself because my husband was on a motorcycle trip. Who knew what we were about to find out. As soon as the MRI was over I was told by the tech that I needed to be taken to urgent care. I immediately started to panic, because I knew this had to be something bad. He told me “you have a tumor in your spinal cord”. As scared as I was before meeting the urgent care doctor – I never imagined that as a possibility. This was the most horrific thing I could ever imagine hearing. All I could think was – Am I going to die? I had to call my husband who was about four hours away on a guys motorcycle trip and break this horrible news to him. We were set up to meet the neurosurgeon the next day, which wasn’t soon enough in my opinion. He explained things with great detail – which we wanted, but at the same time caused us more fear and anxiety. After showing us the MRI, my husband had to hold back tears because he knew from a medical stand point that based on the location and the size of the tumor – the severity and risks associated with the surgery were huge. I on the other hand, was a little more naive and ignorant to what I was seeing. We were told the tumor was five-and-a-half inches long, beginning at C-4 extending down to T-4 and would have to be removed.
The surgeons schedule was completely full for the next two weeks so he gathered a team of people on a holiday to come in and remove my tumor – July 4, 2013. The surgeon told me that I would definitely have some type of neurological deficits. Paralysis of both my arms and legs, difficulty with balance and walking if I was able to walk, but also a possibility and my biggest fear – dying. My surgery took more than seven hours. When I woke up the surgeon asked me to move my hands and toes. Though I couldn’t do much more than that, I was very happy with that for a start. More than anything, I felt so extremely grateful that I survived the surgery! I was so excited to have my husband and my family waiting there to see me. We were told that they were able to get a total resection of the tumor and that it was a grade II ependymoma and I wouldn’t be required to have any radiation or chemotherapy. My total time in the hospital was eleven days. One day ICU, three days on the neuro wing, and seven days inpatient rehab. On a special side note, therapy (both inpatient and outpatient) was a critical component to my recovery and where I am today.
Where are we now?
Today I’m happy to say I’m two-and-a-half years post surgery and back to life in my “new normal” body. I still have (and most likely will have for the rest of my life) numbness from my chest down to my toes which is a weird feeling but I think I’m getting use to it. My balance and proprioception are great, but a lot of hard work and dedication was put into that and will always be a work in progress. But it hasn’t limited me or my life in anyway. The only thing I can say is I still have to do some physical therapy. My doctor has now moved me to getting MRI’s just once a year instead of every six months, which is great. There have been no changes or new regrowth of any kind.
Most importantly, my husband and I had our first baby girl, Taylor. I had a normal, typical pregnancy. After my surgery it was such a scary time because I didn’t know if I could have a baby or not. I didn’t know if the numbness and weakness I had would limit me in any way. I have a lot of weakness in my legs. I won’t be running any marathons anytime soon, but I can still run after my little one.
This experience was truly eye opening. I’ve learned to not take life for granted and to live each day to the fullest. I thank God for all the blessings in my life, especially my surgeon for his gifted hands and my husband for all his love, support and patience. I am so very thankful for the CERN Foundation. They have been such a great resource for my family and me during my recovery. It’s wonderful to see how dedicated these people are to research and raising awareness. I encourage everyone to find out how you can get involved with this amazing organization.