May 2013 I felt as though I had a sinus infection. I was light-headed and just not feeling right. About a week later I also noticed when I looked at the digital clock I had vertical double vision. I went to my doctor and was told it was not a sinus infection, but probably a Schwannoma. I had a CAT scan that day. It showed evidence of a Schwannoma. I was also sent to an eye specialist who suggested an MRI. It, too, confirmed a “tumor.”
I had no medical insurance, so we were waiting to see how much the surgery would be and have the surgery after we knew all the costs, etc. Within a few weeks I was much worse. We called my physician and he said go to the ER immediately. I was admitted to the ER on June 19, 2013. I could not eat, drink and I could barely walk. After another MRI, the on call Neurosurgeon (Barrows) said the scan showed 2 tumors and they were most likely cancer.
My brain surgery was scheduled for June 21. My surgeon was able to remove one tumor, but could not remove the second because of the location. It was deep inside my left lower quadrant of my brain. I was given approximately two months to live. My options for a few extra months were chemo and/or radiation. No other medications, other than Steroids, were prescribed. After a lot of discussion with my doctors and husband, I opted for 12 sessions full Brain Radiation. Those treatments were completed on August 8, 2013.
The MRI done 3/19/14 showed no tumors and the doctors are very encouraged. As of this writing I had my 3 month MRI done on June 10th, but do not have the results as my doctor is out of town. I am on no medications as of now.
My journey is one of love, support and faith. I made an Affirmation Logo for myself when I was diagnosed. I wanted something tangible that I could see and keep reminding myself of my courage and inner strength. It includes the word HOPE. It is easy to forget that we can make it through this no matter what happens. My husband, as my caregiver, is such a good cheerleader for me and loving me through this journey.
I assumed people I knew, and were close to, who had also been diagnosed with cancer would be my strongest supporters. I was mistaken. What I found is that there are those who run to you and those who run away from you. At first it really hurt. The ones I wanted to run towards me, ran away. One even told me when I reported my first MRI after radiation was clear, that I was looking for a NED (no evidence of disease) — I had not heard of that term. She told me she sees it in her cancer support groups all the time. So I looked it up and found out that it meant looking for a prognosis that was not realistic. That I wanted to hear it was clear, but it probably was not. I was brought to my knees by her remarks and then began to question myself. Too much time to sit and think. It was important for me to focus on healing and not negativity which was so easy to do. I ran from her. And sometimes that is the best thing to do.
There is nothing more realistic than waking up each morning and having to wait a few minutes just to clear my head so I can take a step. Or hoping my eyes won’t be too jumpy so I can walk a few blocks, see my puppy dogs face, or read an email from a friend.
I am an artist. Before my surgery I was painting dog portraits and doors & windows in the style of photo-realism. I create baby ultrasound art. Being able to paint again is extremely hard as my ability to focus and hold my hand still while painting takes all the energy I can muster. It is improving with time.
I find that setting goals, even small ones like just making it to the end of the day so I can go to sleep helps me have a purpose. I feel safe when I am in bed. This is hard work and I have to be reminded of that. That is where my wonderful husband steps in.
I have always been absolutely truthful to myself and my family about my diagnosis and my healing. In life I want to know the facts and no sugar-coat it. Be authentic and be yourself. I think that is what drives me to fight this battle. The love and support I have received from those who ran towards me has been beyond wonderful. People I do not know, from all over the world, have sent me prayers, gifts of faith, cards, their support and love. Mostly from a group of artists who I only connect with on the internet.
My family has been truly wonderful. They say when you get cancer everyone around you gets it with you. My husband, who is the love of my life, does everything he can to love me through this.
The doctors I had have been great. But I find they do not always give you more than what you ask. So I found an Oncology Nurse through a Cancer Support Group who does nothing but answer questions. All I have to do is email her my question and I have an answer within hours. I met with her in her office for an initial meeting to see her face to face.
I also have Palliative care that comes once a month. This, for me, is very helpful. Many times I do not know the questions to ask, she informs me what I should be asking. I have found doctors, as wonderful as they are, only give you partial information. I am the type of person who wants to know the good, bad and ugly. I need to know what to expect, so give it to me!
I have always been very strong in my faith and beliefs. When this all happened I found myself in prayer each morning at about 3am when I could not sleep. It is so comforting and my way of finding that quiet peace I so need in my healing. Now that I can get out and take short walks each day, that’s when I pray.
My meditation.
I recently found a Drumming group who meets twice a month. It is a healing group organized through a Cancer Support Foundation. We can talk, drum or just observe for 90 minutes. It is a healing experience for me each time.
I still have a ways to go, but I am so grateful and blessed that I am here. Do I wish my head did not feel jumbled, that my hearing was 100%, that I could drive, that my eyes worked better, that those side-effects from the radiation were not there, that I could taste food … absolutely! But the reality is they do not and each day I keep walking this journey knowing that each day I am still here, I am alive and feeling such love.
Do I know what tomorrow brings? No, but it does not matter because I have today. And for that I am in gratitude. I have heard so many times “you don’t start living until you know you are dying.”
When I made a conscious decision to surrender this disease and not focus on every new ache and pain that is when I found my peace to live. There are good days and there are bad days. On the bad days my wonderful husband says “Hey, just rest, cry if you need to and know I am here.” I watch him struggle as my caregiver and my heart is full of love for him. This journey is not easy for anyone and for me, coming to terms and surrendering is the only way I can get through each day. I am a perfectionist and needing to feel in control, I have learned nothing is perfect and the energy spent on trying to keep everything in control is exhausting. The inner strength and courage comes from not controlling my world and having too high expectations of people and situations. It’s been a very hard lesson for me to learn. So each day I meditate and I keep love, gratitude and creativity in my heart.
Alisann Smookler
alisannsmookler@gmail.com