“Chris, you have a very large brain tumor, we think it is benign and the pathology will confirm it. We need to get you into surgery tomorrow.”
What the hell did this mean? All of this medical jargon was being thrown at my family and I and we had no clue where to turn or what was happening. In the matter of minutes, I heard about the plans for the operation, the estimates of my prognosis, what to expect after surgery and rehab. I was told that the tumor most likely was a neurocytoma, but that in and of itself meant nothing to me. All I heard was brain tumor. I heard that as long as there were no complications, I’d be home in a week and that I could resume the life I had grown accustomed to living. Along with my family, we tried to make sense out of all of these terms and to process what my life would be like after the surgery. However, what I learned very quickly is that there were no tools to guide us on this journey. Other than confident doctors and nurses, there is nothing that could adequately prepare you for brain surgery, especially in such a short amount of time. So as I told my surgeon all these years later, I wanted to help the brain tumor center at Yale in assisting the patients/families they treat there in creating a tool, a guide anyone in need on this journey so that nobody else has to go through the pain, the hardships, the trials and errors that my family and I endured over the next three months.
Over the past year, I have worked with a team from the Yale Brain Tumor Center in creating this very tool. While it is still very much a work in progress, I am thrilled by seeing this idea come to life and providing a resource to all who need it. On the Neurosurgery website of the Yale School of Medicine sits “Brain Tumor Patient Education“.
You will find facts about brain tumors, though not all types. You can read about what it’s like to “meet your team” for the first time, and this goes well beyond your surgeon and assistant. We have provided general information about the various types of treatment and have ensured that the content is presented in a way that anyone can read and comprehend it. We hear the word “surgery” but it’s so much more than an operation. There are the pre-surgery procedures a patient has to undergo; there are things a patient should know about during surgery; and finally, life after surgery. I am sure that reading this could be scary, but it has been put out there to help. I woke up from surgery and had great difficulties. My cognitive functions were gone and I was not expecting that. However, had I have had the chance to know about these things before hand, I would have at least been mentally prepared for the risk. You will also find information for radiation and chemotherapy here.
Finally, and most importantly for me, was the creation of “life after a brain tumor” to make for a wholly educated patient. There are helpful links that a patient and their caregiver can visit; resources such as local support; the latest on clinical trials; etc. Our team went so far as to break it down by life after a benign brain tumor; life after a malignant brain tumor; and life after a metastatic brain tumor. On each, you will find helpful information on everyday living – driving, work, surveillance (continuing MRIs), eating and drinking, nutrition, traveling, financial counseling, etc.
I am excited to continue working with this talented group of nurses and researchers in putting this “guide” together. While nothing on this site should be construed as medical advice or opinions, I do hope it is helpful for that newly diagnosed patient and/or family as they embark on this terrifying journey. I have met so many remarkable people who have undergone each of these different experiences, as well as the caregivers who live this battle with them. Hopefully, with this education, the journey will not seem so bad and you can be a little better prepared than we were.
I guess it is fitting that I write this post just before my first-ever one year MRI (as you’ll read, the intervals for followup varies on a case-by-case basis). Stay tuned for an update!