Jannine

A “Blessing in Disguise”

 

We have all head the phrase, “Blessing in Disguise” at one time or another. Last year I learned what it felt like to actually experience one first hand.

 

My brain tumor was discovered literally “by accident”. I had no symptoms whatsoever. No seizures, no headaches, no dizziness and no double vision. Late one evening, I was walking up a flight of stairs in my home and when I reached the top landing, I lost my balance and fell backwards, head-first down the entire flight. When I landed at the bottom step, I briefly lost consciousness so my husband Daniel rushed me to the ER. Albeit painful, I would soon find out just how beneficial that fall was. The attending physicians performed numerous X-rays and CT scans which showed three broken ribs, a broken nose and bleeding on the left side of my brain. After several hours in the Emergency Room, I was released and sent home to rest and recover. Just one hour after I returned home, the head of the Emergency Department at the hospital called to tell me I needed to return there immediately. The doctors were very concerned about a spot on the opposite side of my brain that would require an MRI. I was transferred by ambulance to a larger hospital, admitted, and met with a Neurosurgeon and his team. The MRI confirmed a tumor, most likely an Oligodendroglioma 2 or 3. Because there was calcification present, the doctors could determine that the tumor had been residing in my brain for some time. The original plan was to watch to see if the tumor grew or changed and check it with an additional MRI in 3 months.  Several days later, the Brain Tumor Board met and reviewed my case and they all recommended surgery ASAP to resect (remove) the tumor. The thought of having brain surgery was absolutely terrifying and I remember the tears rolling down my cheeks in the doctor’s office when they told me. With strong support from my husband and family, I checked into the hospital and had my first craniotomy.

 

The surgery went well and when I woke up surrounded by family, I was as relieved as they were that I recognized everyone and was able to talk. With brain surgery, you just never know what body functions may be affected. I was sent home after a few days. A week later, the biopsy confirmed the tumor was indeed an Oligodendroglioma (an “Oligo” for short) and because it was a stage 2-3,  I would require cancer treatment. I was devastated but then my Neurosurgeon delivered the most upsetting news of all: Although they performed a complete resection of the tumor, they were not confident that they obtained a clear enough margin around the tumor site. I would need to have a second craniotomy right away to remove any stray cells that may have remained. In order to minimize the trauma to my skull, the second surgery would need to be performed before the bone flap had a chance to heal. That meant two brain surgeries in a three week time period. I was devastated and overwhelmed at the thought of having to endure another craniotomy and hospital stay and basically start the healing process all over again. The second surgery went well and before long I was back home, to start my recovery again. Over the next several weeks I tried to adjust to the strong anti-seizure medication and powerful steroids prescribed to reduce swelling in my brain. I was feeling a lot of confusion and agitation, I had sensitivity to light and sound and had a general feeling of malaise and depression from everything I'd been through. Thankfully, my parents, my family and friends along with my husband (who has been and still is my rock) were by my side to take me to appointments, help out and provide love and support when I needed it. My husband helped me shower and dress at first, since certain movements made me feel unsteady on my feet. Family brought meals and helped with errands and housework. Everyone was banding together to come to my aid and I was extremely appreciative. Though I tried not to, I ended up expressing myself in curt and emotional tones more often than not. I was told it was normal for brain surgery patients to be easily agitated but I did not like this “new normal” at all. I unintentionally pushed a lot of people away because everything just seemed so overwhelming. People would call and text to check on me with the best of intentions, but I was becoming increasingly frustrated trying to work my smartphone and other simpler items like the television remote control, so unfortunately I did not always respond in the kindest of tones. My eyes were not cooperating either, so reading a phone screen or watching television was difficult. The surgeries affected the communication between my eyes and my brain and my eyes started turning in and crossing. I spent a lot of time just sitting quietly in the dark, trying to process everything I had been through and everything I knew was to come. I knew this would be a very long road and thinking about it was all so daunting. Cards, flowers and gifts (both purchased and handmade) arrived daily. I was very moved and grateful for all of the various ways that people let me know they cared. Family checked in and friends near and far offered assistance. People extended offers of support to my husband, which was needed as sometimes the caregivers go through just as much (if not more) emotionally than the patient does. I received visits from people I hadn’t seen in a while and every act of kindness warmed my heart. I sometimes had trouble conveying my gratitude because my frustration and emotional ups and downs made me cranky and short-tempered. Luckily the ones who cared about me most loved me through it all.

 

Six weeks later, I began radiation treatments and the first stage of chemotherapy. Radiation was scary, uncomfortable and exhausting but I had a wonderful team that helped me make the best of it. The mask was uncomfortable and made me feel claustrophobic. It pressed so tightly against my skin that it would leave waffle marks on my forehead for an hour after my treatments. The people at the Cancer Center could not have been nicer or more patient with me and I will always be grateful to them for helping me through one of the most frightening and upsetting times of my life. I had thirty radiation treatments, on a schedule where I went every day except weekends for six weeks. I also started a course of oral chemotherapy concurrent with my radiation treatments. I’m proud to say that although the treatments made me tired and weak, and despite several offers from family and friends to take me to and from the Cancer Center, I was able to drive myself to and from all thirty appointments. Being able to take care of myself was important to me. So much had been out of my control for so long and I felt like I needed to take my life back. The cancer may have invaded my body but I was determined not to let it defeat my spirit.

 

On my last day of radiation, I was sitting in the waiting room anticipating being called in to start my treatment. To my surprise, one by one, my family members started arriving. First my husband, followed by my parents, then my oldest sister. Next was my father in law, my sister in law and my middle sister, who came in carrying a huge bouquet of balloons. I was so surprised and touched and very grateful that they all took time out of their busy schedules and work days to come and support me on my last treatment. My husband had quietly arranged for all of them to be there to help me celebrate. That’s just the kind of thoughtful and supportive man that he is. When a patient finishes treatment, there is a large metal bell that they are encouraged to ring. The ringing of the bell is meant to symbolize the ending of the difficult times of treatment and to commemorate the beginning of a new and healthier chapter in the patient’s life. The poem that goes along with the ringing of the bell says, “Ring this bell, three times well, it’s toll to clearly say, my treatment is done, this course is run and I am on my way!” It meant so much to me for so many of my loved ones to be there to watch and hear me ring that bell. It was such a beautiful sound that emanated from that large metal bell as I pulled the cord side to side to ring it three times. I had heard other patients ring the bell during my visits to the Cancer Center and had always been very moved by it but I never imagined how much raw emotion would flow out of me when it was my turn. Many tears flowed and many hugs were shared. We celebrated with lunch at a nearby restaurant where my sister in law gifted me with a medal she had made for me, commemorating my completed course of treatment. She also decorated my car windows writing a message asking other drivers to honk their horn to congratulate me. I received several honks, waves and thumbs-up signals on my drive home that day. It was an amazing outpouring of love and support.

 

When the treatments were over, I returned to work. My employer could not have been nicer or more supportive and I will forever be grateful. First of all, although I had only been employed there for six weeks prior to my first surgery, she kept my job open and waiting for my return for the five months that I was out. Secondly, when I did return, she insisted that I work a reduced schedule to allow me to be home resting in the afternoon as I built my stamina back up. The hair and eyebrows I had lost during treatment had started to grow back and I no longer needed the beautiful scarves and head coverings that had been gifted to me in the weeks prior. I had new eyeglasses with a prism sticker over the lens to align my eyes so I could see properly. It was all another “new normal” for me but it felt good to get back into a routine and to be out of my house where I had spent almost all of my time during the previous five months.

 

Soon after I returned to work, I started taking high dose oral chemotherapy for five days per month as a twelve month course. With the help of the anti-nausea medication, I have been able to manage the side effects and continue to be able to work throughout the past eleven cycles. I take naps on my lunch break on the chemo weeks if I need to and I make sure to eat well and exercise to keep my strength and blood counts where they need to be. I am back to baking which is my hobby and my passion. I continue to have MRIs every three months and I am blessed and grateful to say that my past three have shown no signs of recurrence or change. Basically, I am living as normal a life as I can while continuing brain cancer treatment. My team of healthcare professionals are supportive, knowledgeable and very compassionate. My family and friends continue to love and support me and lift me up when I'm feeling down. There is a saying that comes to mind that I feel best describes the past year of my life: "You don't know how strong you are until being strong is the only choice you have". That statement could not be more accurate. I never thought I would make it through all of the difficult times the past year has brought but with love, kindness, support and a fantastic medical team, I did make it. I’m stronger, healthier and I appreciate life so much more now. I’m still working on controlling my emotions but thankfully my loved ones are patient and understanding and continue to support me in every way.

 

I vowed to myself that if I felt well enough when the announcement for the Boston Brain Tumor 5K Walk for 2018 was made that I would register to walk. I am proud to say that I have already registered my team. Our name is Team OLIGONE and it is a play on words meaning “My OLIGO is ALL GONE”! I am ready, willing and able to walk, alongside my husband, several family members and some dear friends. Every step we take and every dollar we raise will hopefully be one closer to finding a cure for brain tumors and making EVERY Oligo “ALL GONE”! I am proud to share my story in the hopes that relaying my experiences may help someone else who is facing a brain cancer diagnosis. One day was all it took for my entire life to change. Who would have ever thought that a terrible fall down a flight of stairs would end up saving my life? I was so upset that it happened and in so much pain but had I not fallen and had an MRI, the tumor may not have been discovered until it was too late. It just goes to show that sometimes bad things that happen truly are a “Blessing in Disguise”.