My Story…

I’m going to start by sharing that I am not a blogger, but I felt that what I have been through and what I have yet to go through could possibly help someone who may be struggling with something similar.

First, I’d like to share a little more about myself. My name is Ally Cramer and I am 20 years-old. I graduated from St. Joseph-Ogden High School in 2016. Immediately following high school, I attended Parkland College where I graduated with an Associate’s Degree in Radiologic Technology in May of 2018. Shortly after, I started working as an X-ray Technologist while I continued working at the St. Joseph IGA. As far as my medical history goes, I was relatively healthy through out my entire life. The only major surgery I had had at the time was the removal of my wisdom teeth. As a healthy, 20 year-old woman, I would have never guessed that cancer would become a part of my life. This is my (long) story.

September 27, 2018

This day affected my entire life. I remember absolutely everything – even the ER room number. I just want to point out, my diagnosis affected my life. It hasn’t changed my life in any way. I’m still able to work, talk, eat, think, and move (although slower and weaker) like I did before I was diagnosed. And that I am forever thankful for.

My day began with a headache – consistent with past mornings for about 2 weeks. These headaches would throb and pound on the top of my head. However, they would go away with medication, so I didn’t think it was anything to go see a doctor about. I had recently started a new job, so I thought the headaches were brought on by the stress of starting something new.

I continued to go about my day normally. I had an early morning dermatologist appointment, during which I was asked to fill out some documents. For most, that sounds like a simple task, but I found myself having to think about how to write. When I say ” think about how to write”, I literally mean I had to think about how my hand should move in order to make the words I was writing legible. This was definitely not normal.

Immediately following my dermatologist appointment, I stopped at convenient care. I have been a relatively healthy individual for my entire life, so going to see a doctor was something that I was not wanting to do. However, the headaches and the handwriting issues that I was experiencing were only getting worse. I explained everything; however, explaining these symptoms was extremely difficult. Why? Headaches that did not cause any nausea and that went away with medication did not necessarily pinpoint a specific issue. Additionally, explaining differences in handwriting to someone is extremely subjective, especially if they have never seen your penmanship prior to your symptoms. Honestly, my symptoms didn’t seem too concerning until my coordination and balance were tested. My failure to turn my hands in a cohesive motion and my failure to walk in a straight line sparked major concern. I was rushed to the ER.

After discussing my symptoms with the ER doctor, a CT scan was ordered of my brain. An IV was started once I was taken back to my room. I only caught a short glimpse of my doctor’s face and that’s when I knew they had found something. Even before anything was said, I burst into tears. On the CT, a 5.5 cm tumor was found in my cerebellum on the right side. It was 4.4 mm away from my mid-brain (which controls vital functions, like breathing). The cerebellum controls functions like movement, coordination, and balance. Before I knew it, a neurosurgeon and the neurosurgeon’s team surrounded my bed. I had four options: 1) an emergency operation, 2) to treat the tumor solely with radiation, 3) preform a biopsy to see if the tumor is malignant or benign, or 4) do nothing. My tumor was operable, but it was so close to my mid-brain that the surgery was urgent. I chose to follow through with emergency surgery the next morning.

Left: Shows MRI of my tumor prior to surgery
Right: Shows MRI of my tumor following the first surgery

September 28th, 2018

Around 7:30 am, I was transported to the OR for my first brain surgery. I was in surgery for 6 hours. I woke up in the ICU surrounded by my family and my friends. Following surgery, an MRI was preformed to ensure that a majority of the tumor was removed in surgery. The MRI revealed that a majority of the tumor was removed; however, a small potion remained. The tissue make-up of the tumor closely resembles that of healthy brain tissue. Making it extremely difficult to see what is healthy brain tissue and what is tumor, so it was missed during the first surgery. The neurosurgeon did an amazing job removing what he could see without any imaging in the OR.

I spent 6 days in the hospital. Immediately following surgery, my balance was slightly off. While walking down the hallway, I would become dizzy and off balance when turning toward the right. With practice, I was able to improve my balance during those 6 days spent in the hospital. While recovering, I was constantly meeting with Oncologists and Radiation Oncologists. I would need to have additional treatment if the biopsy revealed that the tumor was indeed malignant.

November 9th, 2018

About 2 weeks following my first surgery, the biopsy results arrived from Mayo Clinic. I was told that I had cancer and the cancer was called Medulloblastoma. Additional radiation and chemotherapy treatments would have to be done; however, there was 2.2 cm of residual tumor from the first surgery. Treating a tumor over 2 cm with radiation would be difficult and would require a larger dose of radiation.

On November 9th, I underwent a second brain surgery to remove the residual tumor. Today, I am 100% brain tumor free!

About My Cancer

Medulloblastoma Type 2 or otherwise known as the Sonic Hedgehog type branch out creating crevasses within the healthy brain tissue. It is extremely rare for an adult to be diagnosed with this type of brain tumor (lucky me).

Unfortunately, this type of cancer tends to spread beyond the cerebellum. Medulloblastomas can spread anywhere through out the brain and/or the spinal cord. With additional imaging, I had learned that my cancer had spread through out my spinal cord. I had 3 predominant areas within my spinal cord that showed evidence of a developing tumor.

Treatment

On January 18th, 2019, I finished weeks of radiation treatment. I opted to do Proton Radiation Therapy. Proton Radiation Therapy is different than traditional Radiation Therapy. Traditionally, Radiation Therapy uses x-rays to penetrate the body which irradiates healthy, non-cancerous tissue. Proton Therapy pinpoints and irradiates the tissue that is cancerous and irradiates little to no healthy tissue, protecting vital organs. Medulloblastoma patients are treated with craino-spinal radiation, so my entire brain and spinal cord were irradiated. Each treatment was about 45 minutes to and hour long and the treatments were everyday for 6 weeks.

During my radiation treatment, I was also receiving a chemotherapy drug weekly (for 6 weeks) called Vincristine. Most adults are unable to handle the combination of radiation and chemotherapy; however, since I am only 20 years-old I was able to tolerate the combined treatments pretty well.

Beginning on March 7th, I will start 6 cycles of chemotherapy treatments. During the chemo treatments, I will be an inpatient for about 4 days with 3 weeks in between each treatment. Overall, chemotherapy treatments should take about 6 to 8 weeks; however, the duration of treatment can fluctuate depending on my blood counts. If my blood counts are too low, then I can be denied chemo treatment.

Essentially, the radiation treatment was used to kill the cancerous cells and the chemotherapy treatments are used as “insurance” to ensure that the cancer doesn’t come back.

Side Effects

Fortunately, I experienced some mild side effects with radiation. The only side effect that I experienced from the radiation treatment was a burn/tan down the entire length of my spine (cervical spine to coccyx).

With chemotherapy, I experienced a few more side effects. Probably the most common side effect associated with chemotherapy is hair loss. After about 2 weeks of chemotherapy, I started experiencing hair loss. Today, I am bald, but it is a lot easier to get ready in the morning :). Also, I had some nephropathy or numbness in my fingertips and toes. It caused my voice to sound hoarse, my feet to feel heavy, and I had some nausea.

Today

In February, I had some MRI imaging and a spinal tap done. These tests were used to indicate whether or not I had evidence of tumors and cancerous cells in my cerebral spinal fluid.

My MRI came back CLEAR! So, I had no evidence of tumors or growth in my brain and my spine. I also had a lumbar puncture preformed. For the lumbar puncture a large needle was punctured in-between the 4th and 5th lumbar vertebrae and cerebral spinal fluid (CSF) was collected. The CSF also came back CLEAR, so there was no evidence of cancerous cells in my CSF. I believe to be officially cancer free, you have to have clear scans for 5 years (but don’t quote me on that). So, I’m not there yet, but I’m headed in the right direction.

 

Life goes on…

Life is a gift. And like a gift, it could be good or bad. I never imagined that my life would be affected by cancer, but I have it and I continue to have a good life with it. I refuse to let cancer take control of the aspects of my life that I love. Through out this entire process, I have an endless amount of things to be grateful for. I am grateful that 100% of the tumor was removed; I am grateful for the neurosurgeons, oncologists, radiation oncologists, imaging staff, and nursing staff for their knowledge and skills during my recovery and treatment; I am grateful for amazing family, friends, and co-workers that have been by my side through it all; I am grateful for responding well to treatments. This list could go on and on. It is selfish for me to not be grateful for everything that has happened in my life. Life goes on, no matter what issue you are battling. Continuing to stay positive, thankful, and most importantly happy is the best medicine available.

“The most important thing is to enjoy your life – to be happy – it’s all that matters.”

-Audrey Hepburn

Stay happy, healthy, and positive my friends!

4 thoughts on “My Story…

  1. You are an inspiration to many. Glad that you have started this blog. Remarkable story, continued good health & recovery to you. I am Addy Parke’s Aunt…she shared your story. God bless you.

  2. I’m so inspired by the strength that you possess and convey at such a young age. You have gone through major struggles and your faith has helped you to persevere. Our family continues to pray for your healing and recovery. We miss seeing the Cramer’s!! Thankful for God’s guidance and provision for your strength. Kee fighting Alli!

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