Me with my buzz cut and scar. Hair by Jan Santos
Last week I had a seizure while I was in my art studio. If you don’t know anyting about seizures I can tell you what happened.
First I became confused and was turning in circles to the right. I knew something was wrong but had no idea what was going on. I went into the hall outside my door an put my hands up on the frame. I could not speak. I was hoping someone would come and find me. That’s when Michele came along –thankfully – and asked if I was ok, and seeing that I was clearly not ok, she called 911. We went back into my studio and sat on the bench and waited for the paramedics to come.
They took me to Lowell General Hospital where the seizure was ‘witnessed.’ That means that there were people there who saw what happened during the seizure. When you see someone having a seizure, you need to move all possible obstacles away from the person, lay them on their side in case they vomit, not stick your fingers – or anything – in their mouth, and call 911 immediately.
I was in the ER for almost 24 hours before I had the MRI needed to determine the state of the tumor which was resected in July 2023. Since that time, I have had two more MRI’s, one in October and one in December. The plan was to do them every 8 weeks. My next one was scheduled for February 21, but I only made it to Februaary 14 and then I had the seizure.
After the seizure, I was in the hopsital until Saturday 2/17, and then released. During my hospital stay, I was very confused. I forgot simple things like how to use my phone. I had to sleep – another side effect of seizures. This time I didn’t lose too many words like I did the first time, but the confusion was difficult.
Each and every day since I’ve been home, I have made great strides in recuperating. At first I was a ‘fall risk’ and needed constant supervision – up and down the stairs especially. In the week since I’ve been home, so much has improved, and very quickly. The first few nights, I was up in the middle of the night, rearranging the linen closet and organizing my jewelry! Apparently this is a symptom of a drug called dexemethezone which is a steroid used to reduce the swelling of the brain. Prior to this, there was never time to do all this, but now that I’m just home, hanging out, recovering, there’s plenty of time.
The brain is most susceptable to seizures when it is ‘powering up and down,’ at the beginning and end of the day. The fluid around the tumor cavity, where the tumor was ‘resected,’ is what is causing the problems. Once the swelling goes down, hopefully in another month or two, things will look, feel, and be better. I pray this never happens again. I just want to be HEALTHY.
I am thankful that the seizure was not as serious as it could have been, that Michele was there to call 911 immediately, that I have great, attentive doctors and nurses at Dana Farber Cancer Institute, and the right meds for this experience. We are so fortunate to live in Boston, where we have the BEST medical care in the world.
I have visiting nurses who come two to three times a week to check my vitals (BP, temp, oxygen, etc).The first nurse who came had been diagnosed with the same condition as me when she was 32 and now she is 42. It seemed like a sign to me because she literally knew everything I had been going through without explanation. And, that she has lived a longer life than was maybe was expected.
The most difficult part will be that I can’t drive for 6 months. This means patching together a network of family and friends who will help support me. Fortunately, I am blessed with both.
Jan and Eva were here, and have been here to help me. Thank God. Eva was here for the first couple days and then went on a trip to Italy which was planned well in advance. It must have been a huge worry for Eva to be away during this difficult time. Jan left on Saturday 2/24 to get back to his brand new job and his girlfriend in NYC. I’m so sorry for my children that they have this much responsibility during the early years of their life. Jan is just 32 and Eva will soon be 28.
I have never wanted to be a ‘burden’ to my children and in some ways I feel like that, especailly with no driving for 6 months. I am fairly confident that I will heal quickly – that is my intention. Every day I put my best foot forrward with that intention and start another day.
The sun is shining, another blessing. It is coming on spring. Life can be beautiful. The dawn, sunrise, sunset, rain on the roof, the sky, the clouds moving, color, light, the birds chirping in the morning, the geese honking, stroking my kitten and my cat with love, love LOVE, LOVE. That’s the emotion we need to fill ourselves up with, always, even when the going gets tough. We will all face death – that’s just a fact. We don’t know how we will die, but we need to be brave, corageous and undertand that this is our path. To live a full life and then to pass on. What’s next is a mystery. One of the great mysteries of our lives.
Reading books is also a blessing. To be able to read the words of Buddah, Jesus, Rumi, Tich Naht Hanh, Pema Chodron, Jon Kabbat Zinn, and so many others have raised my consciousness and helped me understand this world. Yoga is a blessing, meditation is a blessing. All of these help to guide me and ground me on my path. I’m not sure why this is my path, but it is. Life can be a struggle – to understand and to live, but I’m going to give it my best shot to live the best and fullest life I can. I wast to be an example for my 2 beautiful children. Also, I KNOW that Lea is here by me all the time, sending me love, messages and signs. All of these things fuel me and propel me forward.
I want you all to know how much I love you and if I haven’t told you, I’m telling you now. I LOVE YOU, and thank you for EVERYTHING. All you do for me. They are all blessings that I keep close to my heart.