My Cancer Story
My cancer story has been quite the journey!
Since 2011 I have suffered from headaches. I would complain about headaches when I would dance, eat certain foods, have sinus infections, and throughout my rigorous strengthening and conditioning. I would take a Tylenol and take a nap and the headache would subside.
It wasn't until I went back to my hometown for a routine eye exam in 2018 that my symptoms and signs were detected by my Optometrist.
On Friday June 8, 2018 I had a routine eye exam scheduled and during my visit the Optometrist asked had I been having headaches. Of course, I stated yes because at this point, I had. I also had bad allergies, so I thought that was the cause of my headaches. The Optometrist says, “I’m having trouble finding your optical lining and your optic nerves are swollen”. My thoughts were “what is she talking about and why is this a big deal?!”. She then proceeds to diagnose me with what is called Idiopathic Intracranial Hypertension (IID). The diagnosis IID is where pressure inside the skull increases for no obvious reason and it’s most commonly found in obese women of childbearing age. Granted I didn’t consider myself as petite but I was not an obese woman. I was quite offended by the diagnosis and scared because I was told I could wake up blind if I didn’t see an Ophthalmologist or Neurologist soon. After sharing the information with my mother and having some concerns about what had been said to me, I decided I wanted to get a second opinion. I went to see another Optometrist for a second opinion the same day of my diagnosis and they too, agreed with the diagnosis and said if I had another severe headache go to the ER directly and have them run a CT scan and MRI.
I continued to go about my weekend. The next day (Saturday) I went to a music festival. I had a sugary drink at the festival and no less than 30 minutes later I had an excruciating headache. So much so I took two Tylenol to help ease the pain. I thought sleep and medicine would help. I had to leave the festival early and head back home to relax. Thankfully I did not drive because I wouldn't have been able to. I didn’t go to the ER that night but if my symptoms persisted, I was going the next day. I was nervous at the thought because I knew God was trying to tell me something wasn’t right and I wasn’t listening.
That following day (Sunday) my head was back hurting yet again, and it caused me to feel dizzy and very light headed. I got up to use the bathroom, and I had to tilt my head back with my chin lifted to release the pressure when I would make a bowel movement. My head was pounding, ears were ringing, and I felt chills over my body. Scary as it seems this was the red flag for me and my mother who then said, "okay enough is enough you’re going to the ER!”
I went to the ER that Sunday with another headache and the doctor ran a CT scan on my head. I was provided some medication aka “a cocktail” to help me relax and sleep off my headache. After the CT scan, the ER doctor came into the room and told my mother, “she has a lot of fluid on her brain." He stated he needed to contact the Neurologist on call about the findings and see how he suggest we should handle them. The ER doctor stated we might have to do a spinal tap to drain the fluid off the brain. However, the Neurologist on call would tell us what is best. He instructed us to "hang tight", he would be back in a few. When he returned, he stated the Neurologist on call agreed that it would be best to see a Neurologist closer to home because of the suspicious findings. "Don't wait on this! This is something that needs to be done ASAP" he said. The ER doctor stated, "If for some reason you can't get in for like a month out after telling them you have your CD's that I'm giving you from the ER and telling them what the findings were-You give me a call." He then proceeded to give my mother his card and on the back of it, he did something he wouldn't normally do, he wrote his personal cell phone number. He said, "it might give her a headache to have to ride back down here but I will do what I have to do to help her out."
Of course, at this point I begin to wake up enough to slowly comprehend what was going on. After finding out the additional information I am concerned, and the results didn’t seem to have any clear direction in diagnosis. Granted the physicians agreed with the eye doctor but we could sense the doctors had more to tell us but couldn’t until they were certain, and a Neurologist saw me.
Being that I was in my hometown visiting family that weekend, I had to of course schedule an appointment back home where I reside for a Neurologist. I knew from working in the medical field that this could take weeks or months to get in with a specialty doctor. However, I did as the doctors recommended, I called around to get a consultation from a Neurologist within the next few days. After calling around and hearing 2-3 months for initial consultation, the Holy Spirit led me to call one doctor. I finally found a Neurologist who could get me in the following week within a 10 mile radius of my home.
Fast forward, I go for my visit with the Neurologist for the consultation June 18th. He has my CT scan and stated he would like to have an MRI run to get a more detailed view of my brain and neck. He further explained if the MRI shows the excessive amount of fluid and clear reasoning for the headaches, he will have me get a lumbar puncture (spinal tap) to remove the fluid from my spine and off my brain which would then release the pressure that's causing the headaches. I had an MRI performed June 19th, and after the MRI was complete, I scheduled a spinal tap for the next day June 20th. My MRI results were sent to the Neurologist immediately after the MRI. The next day I was prepared to go get a spinal tap at the same hospital that I got the MRI. But that evening, the phone rang.
Dr.’s Office: Ms. Coleman?
Dr.’s Office: This is Dr. Gill, “Ms. Coleman, I am calling because I need to cancel the spinal tap and I need you to schedule an appointment to see me ASAP. There were some suspicious findings and I need you to come in to discuss. Please call the front desk to get in to see me.”
I called the front office and got scheduled for the next morning bright and early to come in and see Dr. Gill. No less than 2 hours later, Dr. Gill calls again and says,
“Ms. Coleman, I thought you were coming in to see me”
I said, “yes, I have an appointment early in the morning”
He says, “No I need you to come in now if possible”.
Not exactly the call I was expecting nor the vibe I was looking to get through the phone. I called my mother and I was nervous because usually that implies bad news but I needed her support to help me remain optimistic. We urgently got to the doctor’s office no less than 30 minutes from the time he called and I was taken to the back room to see him.
Dr. Gill came into the office with my medical folder and MRI disk from the hospital. And then it happened... the words came flowing out...
Dr. Gill: After thorough analysis of your MRI it was clear that in addition to the Hydrocephalus, there is a mass/tumor on your brain blocking the CSF fluid (cerebral spinal fluid) from releasing to your spine.
Then there was a pause,
Me: A tumor?
Dr. Gill: The reason why there are headaches is because the tumor acts as a dam blocking the fluid from releasing into your spine from your brain. There is a sense of pressure due to the blockage of the fluid. It has nowhere to go.
At this point I didn’t hear anything, and the doctor’s hands were raised to show me the size of the mass… “the size of a kiwi”. I was so crushed and didn’t know how to respond, all I could do was shed tears, I was speechless. Was it malignant? Benign? What?! Although the doctor stated it was benign, I knew he couldn’t detect anything and give a specific explanation until I had a biopsy. As a public health professional, I trust facts not a matter of opinion. I rested my faith in God and not the physicians, but I did have to be aware that whatever was coming my way, it too would serve its purpose.
Soon after, Dr. Gill left the room and gave me some time to digest the news and came back in to discuss the next steps because this was not something I could sit back and let it run its course. 1) I didn’t know whether it was benign or malignant 2) the headaches would get worse and I could lose my vision 3) I didn't know what type of tumor I had growing inside my body. Therefore, the next step was a referral to a Neurosurgeon to discuss the course of treatment. The spinal tap was not useful at this point because the fluid itself was built up and the fluid removal would not benefit me and could cause more damage without knowing if the tumor has metastasized to my spine or etc.
About a week later I got in to see a Neurosurgeon with an expedited consult , he was updated on the process thus far based on my order and notes provided to him by Dr. Gill, how it all began from a routine eye exam, and stated he would like to have another MRI to get the most recent view of my brain, neck, and entire spine. This type of MRI was of the cervical, thoracic, and lumbar spine and would take up to 3 hours to complete. After getting the results, I would come back in for another visit to discuss how we would proceed. The MRI results didn’t change thankfully, and no other spots were detected along my spine, and he agreed with the Neurologist in their findings of IID and Hydrocephalus. The Neurosurgeon explains the best option is brain surgery to remove the tumor from my brain. The tumor was located within my cerebellum and C1&C2 of my spine. As much as I wanted to avoid surgery, my doctor and I determined I’d undergo Suboccipital Craniotomy for tumor resection for the best results and of course the only way to detect the tumor for cancer was to have a biopsy sent to the pathologist. The Neurosurgeon would obtain tissue to determine the tumor type and remove as much as possible of the tumor without causing more symptoms.
As the Neurosurgeon explained the surgery, he stated there would be two procedures performed during the surgery. The first procedure was the craniotomy, removal of the tumor while using a navigation system and the second procedure was called a decompression, posterior cervical, fusion, level 1 (also referred to as a shunt). The craniotomy procedure required the doctor to shave the backside of my head, making an incision from the crown of my head to my lower neck for tumor removal. I would have neurosensors in my mouth, face, head, on various parts of my body to ensure the nerve signals were intact. The second procedure was the decompression or shunt that had to be placed to manage my Hydrocephalus. For that procedure the doctors would have to make an incision on my right front side of my brain for my shunt to drain the CSF. The shunt was to help drain the brain fluid off my brain and spine. At this point I was traumatized; I have never had surgery before in my life let alone brain surgery and they had to cut my hair for the first time without a choice of how it would look!!!! So many mixed emotions and so many thoughts came over me. I was terrified, anxious, and stressed. I didn’t know what else to do but pray, try and stay positive, and think good thoughts.
On July 18,2018 I was being prepped for brain surgery. The surgery was originally supposed to take 3-4 hours and it took 8 hours! Twice as long. At first my family was concerned as they waited on me to come out of surgery and get transported to recovery. But God's grace covered me and I managed to get through surgery successfully. After a few hours in recovery being carefully monitored, I was then moved to a room in ICU. As I laid in bed after my surgery, the shunt in my head draining excessive fluid, I had yet to see my surgeon or been told the results of the biopsy and how much of the tumor he was able to remove. Instead, I am greeted by another physician who then proceeded to say,
“Hi Simone, how are you feeling? My name is Jessica and I am the Oncologist.
My heart dropped! Both myself and others in the room look confused, wait, you're an Oncologist? Why are you talking to me? She says “Oh they haven’t been in to see you yet?” I said Ummm no, what’s going on? And there it goes as gently as she could explain the news, she uttered the words- “Ms. Coleman, you had a Grade II Ependymoma.” All I heard was -oma. Being a daughter of a thyroid cancer survivor, I knew this was no good. I knew -oma was the suffix for cancer. The doctor then says, “I am so sorry.”
At age 26, I had been diagnosed with a Grade II Ependymoma. This type of cancer around the brain is most commonly found among children and yet I had it. A pediatric cancer that was slow growing. How long had it been there? They couldn't determine.
The Oncologist further explained that I will have a healthcare team come in the room and discuss everything in detail as she hands me her card. That’s when I hit rock bottom. I was strong up until this point, but I was hysterical, crying in my mother’s arms, shaken up, and at a lost for words.
Soon after, I had a Neurosurgeon, Oncologist, Hematology Oncologist, Hematology Radiologist, Speech Therapist, and Physical Therapist all knocked on the door. They explained the surgical pathology report showed the tumor was malignant and they were able to remove 99% of it. However, treatment will be required as a method of prevention of recurrence. I was confused and sounds so cliché, but life flashed before my eyes. If they got a good percentage of it, then why did I need treatment?! It all happened so fast and the process was so overwhelming. I thought I was cancer free but that 1% still tugged on my heart!
While in ICU, my bed had to be set at a certain angle because of my shunt. My intercranial pressure (ICP) had to be monitored regularly and only the neuro team were able to move the angle of my bed and manipulate the drainage for the shunt. My doctors said they had to wean me off the shunt the way you wean a baby off a bottle, because my body had been accustomed to having so much fluid on my brain for so long. After a while, the shunt was clamped off to test the pressure in my brain and symptoms of a headache. Unfortunately, I was beginning to get headaches again so even more fluid had to be drained. The next day the shunt was still placed in the front of my head draining the excess fluid as I was elevated in the bed and my CSF levels had finally come down without causing a headache from the pressure. After a while, I was fortunate to have the shunt officially removed and bandaged over. While in ICU, I received speech therapy, physical therapy, and occupational therapy visits frequently to ensure I could walk, talk, and had the cognitive skillset to handle being discharged. I was blessed in this moment to have done so well that I was shocking the nurses and physicians with how well I was doing in the face of adversity. I was riding the waves of change and thriving. So much so, usually when a patient has had such a major surgery they move to the step down unit, for me I was discharged directly from the neuro unit I was in. I was blessed to recover within the few days and go home right from the Neurology floor which was very rare, while most patients must go to the step-down unit and then are released to go home!!! I was a miracle in the flesh!! Doctors and Nurses were very excited to witness a brain surgery like mine.
Recovery was between 6-8weeks, my stitches and staples would be removed, and my surgical site would be checked along the way. Once cleared, I would see a Hematology Oncologist to discuss treatment of the remaining cancer and prevention. I was at a place where I had just had stitches and staples removed when I saw the Hematologist Oncologist. We were scheduling a consult visit for proton therapy, which was a less invasive and a clear directive treatment to the site of cancer. But it was not too long after the stitches and staples were removed, I hit another bump in the road. You know when you are about to have surgery and they make you sign the waiver for all the potential risk and possible complications?? Well one of those complications was a possible CSF leak. And there you have it, I’m in the car heading home from a doctor's visit when I started to feel what I thought was sweat draining from my head to my neck. It was a clear like fluid draining from my incision. It raised concern to my mother who was my caregiver through this process. She looked online via Google as most people do and said “what if this is brain fluid Simone?” I said no way, it can't be. She urged me to call the nurse with this concern and the nurses then directed her to bring me in. Of course, I go into the Neurosurgeon’s office, the nurse takes one look at it, calls over to the hospital to my Neurosurgeon who was preparing for another surgery, and I’m directed to go to see him at the hospital. At this point again, I don’t know what is about to happen. After checking into the hospital, I am then admitted, and told I must have emergency surgery to re-stitch the incision site due to a complication of a CSF leak. Next thing I know, I am isolated with my head covered with a shower cap because I may be susceptible to Meningitis. All I could think was here we go again.
On August 6, 2018 I am instructed to stay in the hospital and postpone treatment for proton therapy because I was having emergency surgery that same night. The resection revision would include re-stitching the incision and gluing the surgical site. If I continued to have leakage, I was informed I would need a permanent shunt. But favorably so, surgery took no longer than 2 hours. Soon-after I was in recovery again recovering from the 2nd unexpected surgery. My neurosurgeon stated the leak was from a pin size hole in my brain that was causing the fluid to seep through. While in the hospital, four days after the second surgery, a lumbar puncture was performed at my bedside. With the previous trauma, I had to stand strong and withstand another hurdle. The doctor drained fluid from my spine to test for cancer cells. The lumbar puncture despite having limited mobility to curl my body for this procedure, I aced this test. God gave me strength I didn't even know I had to win the test. I was able to push through the puncture and after, I had enough energy to ask the doctor a few questions (caught on recording by my mother). Five days post-surgery I was released to go home. Four-Five weeks later I was recovering at home and after clearance from my doctor I received confirmation that a permanent shunt wasn't needed. I was then able to go for a proton treatment consult.
After my consult, being sized for my treatment mask, and touring the proton facility, I was scheduled to begin treatment after the Labor Day holiday. My proton treatments involved 45min-1hr session proton therapy 5 days a week for 6.5 wks. There were side effects of being nauseated, lack of appetite, fatigued, and more but God saw me through it. I beat cancer, cancer didn’t beat me! That’s when the frustration washed away, I was able to deal with the reality and the emotions of overcoming cancer. The actuality of emotional distress and coping with my new way of life and my acceptance of what I had gone through was all new to me.
During my treatment, I was blessed and fortunate to stay at the Hope Lodge with my caregiver. Hope lodge is an amazing non-profit organization through American Cancer Society that is a housing assistant for cancer patients to aid in recovery. The admission process and services rendered during my treatment were amazing. So grateful and blessed for the services and people who came in to cook and the friends I made. Some beat the battle, and some fought long and hard while undergoing treatments for a variety of cancers and lost their battle. Through these times is where I gained my strength to press on and remain hopeful.
My cancer journey taught me to listen to my body, be obedient, faithful, and trust God in the process. To choose Faith over Fear, be the Overcomer and to not only Survive but Thrive (prosper). I made the decision to thrive and cancer was not going to ruin me. Through my journey, recovery, and even after treatment was over it became very clear to me what’s important, my faith in God (trusting solely in his good works), every day of my life, my peace, my health, happiness and cherishing new memories with loved ones. I learned to surround myself with love and support of my FBCG church family, family, and supportive friends. (I had to distance myself from the naysayers and doubters, those that would try to bring negative thoughts to my situation). I am even more grateful because every day is a blessing to be alive. I don’t take my health for granted. I felt at ease and knew God showed me grace and mercy and this was a part of my purpose and destiny. There were many quotes I often told myself along this journey:
All you have in life is here and now, and I chose to make the best out of my situation, by turning my pain into my purpose.
A setback is just a setup for a comeback!
You can’t judge my breakthrough until you know my been through!
My attitude determines my altitude!
Don’t ever discount the test that produces the testimony!
It was such a blessing to lose a massive amount of my hair in this journey yet never have to wear a wig-that's God. It was a miracle to still smile despite the days I struggled to get up for treatment. It was okay to feel discouraged, it meant God was and still is shaping me! My scars are beautiful because they are a sign that healing is taking place! My scars are a glorious reminder of the things I have survived. I used to think I wouldn’t utter those words until I was older and had aged some years, but truth was any traumatic experience can lead you down that path and change your perspective on life and reveal to you what really matters. I wish people didn’t have to go through catastrophic experiences to learn about self-care and learn not to take life for granted. Beating cancer made me better, stronger, wiser, and I can say I am standing here two-years cancer free, hair growth that I didn’t think was possible, doing adventures I never would have thought imaginable. God blessed me with all 5 senses despite doctors making me aware that I could possibly lose my vision, sense of smell, etc. I am stronger than I’ve ever been mentally and feel like I’m living my blessed life. Each day is a process, people see the outside and think I’m 100% recovered from this journey, however mentally, physically, and emotionally cancer still resonates with me. I’m human, I’m thankful for every day, every birthday, and every celebration of life. But throughout my journey, everyone has told me my smile and faith are my strength. My smile and faith are what got me through and still continues to get me through. My love for God, my faith in him, love for life, and my loving spirit are what keep me striving and thriving to be better each day I wake up. There were so many days I felt like giving up, but I knew I was placed on this earth for a greater purpose. I have a story to tell, my story.
Not having headaches anymore amazes me to this day. It feels strange not complaining about them or working out without a rush to my head. Despite the stiffness I experienced in my neck and sensitivity with wearing jewelry, I wake up every day worry-free because I know Gods got it, so much so I forget that I even had cancer sometimes. I want people to listen to their bodies and know when something isn’t right. You can’t put a price tag on your health! You know your body. You don’t have to be a hypochondriac by day but do inquire when something’s off. I wish it didn’t take cancer to change my habits, but it did.
Along my journey, I learned cancer feeds off sugar, so I’ve begun to eliminate it from my diet (candy, snacks, etc. outside of fruit). Treatment changed my appetite, urge to eat certain foods, and my sensitivity to smells. I customize my nutrition plan based on my goals and my needs. So now I cook differently, I don’t fry many foods, and I am limited to what meats I can eat. Because of my brain surgeries, my scalp is sensitive, but I've learned to do my best with what resources I have at my fingertips. I was also able to begin a workout regimen right in the comfort of my own home. I make embracing this new normal a beautiful thing. I look at my journey and how far God has brought me from. If anything, I’m thankful because it allowed me to shed some pounds, find my passion and enjoyment for the precious moments in life, and of course it's helped tremendously to eliminate any more headaches.
Cancer has changed my view of life. I'm intentional about self-care and doing what brings me joy. My scars are beautiful because they are a sign that healing has taken place! Two years later and my eyes are still not back to normal. There is still swelling of my optic nerves, but that's normal due to the trauma I have endured. I still go for 6 month MRIs of my brain and spine to check for reoccurrence. However, I know all my scars are a glorious reminder that I survived! Lastly, they are the gentle reminder that God has kept me and is continuing to keep me on this journey.
God has shown me favor and mercy all the years through, from beginning to end. He was with me every step of the way. Despite this cancer journey, I decided to live on! Every chance I get to share my story and how far I have come, I do. No one can tell your story but you, how will you choose to share yours?
The Results are In
My Only Choice
Diagnosis of a Lifetime
The Need for Change
Time to Take Action
Love the New Me
1 year in remission