I just want to preface this story by telling you, if it wasn’t for Cheryl reaching out at the very moment I needed someone, WalkTalkConnect would not exist. It is Cheryl’s generous spirit that inspired us to create WalkTalkConnect. When I couldn’t walk, Cheryl couldn’t talk ~ we knew we needed to connect. Thank you, Cheryl ~ you’re one amazingly, wonderful, generous, spirit that holds more joy in her heart than anyone I know. You are the essence of Living Life.
I got the phone call at 6:15pm. On a Friday. Caller ID showed me before I picked the phone up that the call was coming from the office of the Ears, Nose, and Throat doctor that I saw earlier that week for the full feeling and dizziness symptoms I had been having for several weeks. (Actually much longer than that, to be truthful). I had had a full panel of labs drawn at that visit and had just completed the recommended brain MRI at 4pm that afternoon. I knew that there was no good reason that a doctor’s office would be calling with me with recent results unless those results were life threatening. “You have a brain tumor,” I was told. “You also have hydrocephalous (I previously worked in an NICU, and I knew what THAT meant, dangerous fluid build-up in the brain) and I want you to go the ER at the University of Minnesota now”. I was told that due to the swelling in my brain I shouldn't drive myself. I asked if it was OK if I went to North Memorial, as I have worked for that hospital since 1987, and I felt comfortable there. I was given the OK for that option. I walked upstairs and announced the news to my parents, that I had a brain tumor and I needed them to drive me to the hospital. Now. I went back downstairs to pack. How do you pack for a brain tumor, anyway? I knew I would need to have surgery of some sort but grabbed a few things in silent shock.
At the hospital, they had been informed I was coming so I didn’t have to wait out in the noisy waiting room. I was escorted to a room, got dressed into my hospital gown, and waited for the nurse. When the nurse walked in, I started crying. She was a former co-worker that I had worked with in the NICU (Neonatal Intensive Care). In fact, I was the nurse who oriented her. I immediately felt more relaxed and she took great care of me. I probably had to wait 3 or 4 hours in the ER until I was able to get moved to my room upstairs. As a hospital employee, I was given the courtesy of a private room.
I met with a neuro-surgeon in the morning. I had a large brain tumor growing out of the portion of my brain called the third ventricle. This was blocking the outflow of cerebral spinal fluid from my brain and caused the increased pressure and fluid build-up. I was scheduled for surgery on Tuesday, December 4th. Until then, I had to remain in the hospital because of the risk of seizure from the hydrocephalus. Those 3 days were a blur of visits, phone calls, and texts. My sister unexpectedly flew in from Australia to be with her family who was in crisis. Coincidently, I had a third sister who had been previously diagnosed with a pituitary adenoma (a different type of brain tumor) who was scheduled to have hers removed on February 11th, one week after me.
The day of surgery, I was wheeled down to the PIR (Pre-induction Room) to get prepared for surgery. It was uneventful. I wasn’t particularly nervous. I knew that I needed to have the tumor removed, and in order to come up with a treatment plan, we needed to find out what kind of tumor it was. I was told my surgery lasted 8 hours. There were 2 different neuro-surgeons involved and they were able to remove about 99% of the tumor. Any attempts at removing the portion of tumor that had attached itself to my brainstem were met with a plummeting heart rate and blood pressure. They made the call to quit at that time. The plan would be to have radiation therapy on the leftover tumor at some point in the future. I remember waking up when I was in the recovery room. I knew the nurse taking care of me. I remember her having trouble getting my blood pressure under control.
When I awoke again, I was in an Intensive Care unit. I was unable to swallow my secretions. I was also unable to talk. I distinctly remember trying to convey to my nurse that I needed a suction catheter so that I could suction the increased secretions and saliva out of my mouth that I couldn’t swallow or spit out. I finally was given a sheet of paper and a pen and wrote that I needed a Yankauer, which is a type of rigid suction catheter. I was able to suction my mouth out whenever I needed to after that. Those first days were a blur. I am told I asked for my phone constantly, but luckily was not given it.
After several days I was moved to a regular neuro nursing floor. I was brought down 6 times a day for rounds of PT (physical therapy) OT (occupational therapy) and Speech Therapy. I was unable to walk. My talk was very garbled as one side of my tongue was not working. I failed a swallow study and was not allowed to drink anything. I craved a cup of coffee. I had double vision and by wearing a patch on one eye I was able to see correctly.
Due to an oversight, I had only been getting normal saline through my IV since the surgery. No sugar, fat, or proteins of any kind. I was also not allowed to take any fluids by mouth due to the choking hazard of not being able to swallow properly. I was still going down for therapies 6 times a day. I told my friends that I was wiped out and knew I needed some sort of nutrition to keep recovering. After drawing attention to this, an attempt was made to place a feeding tube down my nose and into my stomach. The RN was unable to get the tube successfully passed. At that point, I asked to have a PEG (Percutaneous Endoscopic Gastrostomy) placed. I was working for a group of gastro-intestinal doctors and I knew that any one of them would be more than willing to place a feeding tube in me. Within an hour of asking, I was getting wheeled downstairs to the endoscopy suite. I remember my GI doctor holding my hand as the sedating medications were given. When I woke up from that, I had a feeding tube in my stomach. The following day I was able to start getting feedings through the PEG tube, three times a day. One and a half cans of adult liquid nutrition. I was still being told to not have anything by mouth but did sneak sips from time to time. Practice makes perfect, I told myself.
As I stated before, I was 6 therapy sessions a day. Physical therapy, occupational therapy, and speech therapy. All three were twice a day. PT (physical therapy) was so hard. The first time I stood for the first time my legs shook like rubber bands. I started with using a walker. I remember the first time that I was given the OK to try to walk. I had a transfer belt around my waist as I was walking with the physical therapist. It felt so odd to have to will my body to do something that used to be first nature. Purposefully trying to place one foot in front of the other. I had to practice going up and down stairs with a cane. I worked on strength and stretching. In OT I had to practice hand to eye coordination, demonstrate that I could balance a checkbook, and fry myself an egg. In speech therapy I worked on learning to speak intelligibly again.
It was 2 weeks before I was given my official diagnosis. I had an Ependymoma, a rare tumor in adults, more commonly seen in children. It was a Grade ll. Grade l being benign, Grade lll being cancerous. I was told that the 5 year survival rate was 85%. As this was so rare in adults, there were no chemo protocols for treatment. Instead, I would get 6 weeks of radiation therapy to target both the base of the tumor as well as the remnant still attached. I got bundled up one day and was given an ambulance ride to meet with the Radiation Oncology doctor to discuss the plan of care. I was able to sneak myself a cup of coffee for the first time in weeks at the Radiation Clinic. It tasted so good! I was told I would need 30 radiation treatments that would get started after I returned home.
I went home for a trial night on December 23th, 19 days after the initial surgery. This went well, and after a brief return to finalize paperwork, I was discharged for good on Christmas Eve. Best gift ever! I was supposed to continue PT and speech therapy. I was never contacted to set up PT my Neuro Oncologist gave me the OK to continue to work on things at home. I did go for weekly speech therapy for a month.
I went for an appointment to have my radiology mask made. This is a plastic grid of rigid plastic that when heated becomes flexible is pressed down around your head, neck, and shoulders to make a perfect form fitting mask. This actually snaps down onto the MRI platform to keep your head perfectly still so the radiation is targeted at the proper areas. The actual radiation therapy took probably 10 minutes and was painless. I could smell the radiation, or at least the electricity of it? I went every Monday-Friday for a total of 30 treatments. For the first week, I had friends and family drive me. I was given permission to drive after week one since I did not have any seizures since surgery. It was such a relief to be able to drive again, and a sense of freedom and normalcy during a very unnormal time in my life.
Once I got home, I started eating on my own. It took me a very long time to eat each meal, starting with just a teaspoon of food at a time, and plenty of water. But it got better the more I practiced. Once I completed the radiation therapy I was able to get my feeding tube removed. That was wonderful!!!! The same doctor who placed my feeding tube removed it for me. He told me afterwards that taking out that feeding tube was one of the most rewarding things he had ever done as a physician. It meant a lot to me, too.
I was able to go back to work on February 1st. My job consisted of speaking to patients on the phone. Great speech therapy. My voice was understandable but certainly a lot different than it had been prior to having surgery. I started working 4 hour shifts as I finished my radiation, went to 6 hour shifts on March 1st, and then back to fulltime April 1st. It helped to have a manager and co-workers who were willing to let me work my way back up to fulltime.
So, all of that happened almost 7 years ago. I have settled and accepted my new normal. My residual side effects change from day to day. I always have tingling in my right fingers. I have constant low-level ringing in my ears, but it has subsided into a background noise that I forget is there. Half of my tongue doesn’t work well, and I sure can’t sing like I could before. I have a speech impediment, that while my speech does seem to keep improving, I will always have. There is nothing that I haven’t been able to do, albeit, I may have to think about how I am going to do something. Things that came naturally, like skipping, I have to think through the actual mechanics of. Yoga is helpful as is aerobics. Being physically active helps with the stiffness I can get in my lower legs. Emotionally, I know that I react differently to things than I did in the past. I get my fight and flight reflex triggered a lot easier. I have to purposefully will myself to wait before reacting. I continue to refuse to let my diagnosis keep me from doing what it is I want to in life.
My current medical follow up consists of all routine recommended medical, visual, and dental exams that a 54 year- old woman is supposed to have. I have a full brain and spinal cord MRI done yearly followed by an appointment with my neuro-oncologist.
It goes without saying how important it is to have the support of friends, family, and co-worker after a spinal cord or brain tumor diagnosis. I could not have gotten through this ordeal without them. As a means of trying to learn more about my diagnosis, I have met others who have been diagnosed with the same type of tumor. The connection has been priceless. Knowing that I was not alone in dealing with this gave me comfort and hope. In sharing my story, I would like to offer that same comfort and hope.