I’m just passed the one-year mark, I hate to call it an anniversary of my craniotomy resection, which was February 27, 2017. I remember that day so clearly. I’ve had my gallbladder removed and two C-sections and I can tell you this, I have never seen so many lights, monitors, equipment, tools, etc. in an operating room before and I wasn’t even wearing my eyeglasses and I cannot see crap without them. It was like some fog of silver and white with stainless steel all around me and the anesthesiologists.
When I came home on the the 29th, just two days post-op, I wondered what my life was going to be like going forward as my husband had to help me take a shower as we both scrubbed dried up blood out of my hair. One thing I knew was that I smelled a lot better. I’m not going to lie, I was pretty rank after being in the hospital bed.
I went from being the person in charge of running our household, an independent woman, always knowing when and where my kids were supposed to be and making sure I got them there, getting my career started again, having a husband who traveled with his job every week, a hiker, a bather, a multi-tasker extraordinaire and a driver to someone who could not be left alone for the first week post-surgery even while showering (it took us over a week to get the blood out and ended up cutting out the rest of it) or using the bathroom. I have always said that nothing kills romance more than watching your loved one taking a dump, but I digress. I couldn’t walk up the stairs I have climbed for eleven years at a minimum of 6 times a day, I slept in a seated position on the sofa to which I screamed out in the middle of the night because I dreamed I was on the operating table and was falling off. I could have been cast in a horror film with that scream. Poor Noel. I couldn’t take baths because of seizures, I couldn’t stand in the shower, so I needed a stool, I couldn’t strain, I couldn’t bend and the list goes on and on, but I could talk, I could laugh, I could hug, I could read, I could hear, I could see, I remembered things and I could write. It was and is truly amazing.
It was Penelope’s birthday on March 2nd and my friends made her day very special. I have always enjoyed celebrating my kids because honestly I feel like they are gifts entrusted to me. It was all a blur and I was so grateful to be here this year to celebrate with her and order her cake and throw her a surprise party fit for a teenage girl.
I was even in the midst of working on our web series and was able to attend the Nashville Film Festival where our series was being shown. I had good stuff going on along with the not so good stuff.
I accepted my diagnosis very quickly, but I did not look up statistics and I didn’t do a ton of research at the very beginning. Noel, my cousin, Missy and my friend Lori took care of informing me of what I needed to know. I knew what I had was rare. I knew what I had was even rarer for someone my age. I knew it was not a good diagnosis and I knew it was not curable. I did radiation, chemo, changed my diet dramatically, began taking a ton of supplements, practiced yoga and meditation, walked and rested. I had to come to terms that I had lost my independence and would have to rely on others to help me and boy did people help. I still get teary eyed every time I think of all the help we have received. Just yesterday, I had a friend drive me to a doctor appointment and my neighbor replaced our headlight so that our daughter could drive the car last night.
What I did not know and randomly stumbled across this while I was alone is that it is the most aggressive and deadliest brain tumor. Horrified doesn’t even begin to describe what I felt at that very moment. I called Noel while he was in Chicago and I told him. He said, “I’m so sorry. I thought you knew”. My friend Lori said, “those are just words”. You know what? She was right. They are words that lit a fire under my ass to fight even harder.
Noel had taken out a cancer insurance policy for the both of us. I highly recommend this for everyone. My mom had one as well. We got it after she was diagnosed with cancer and his brother. With that money, Noel convinced me to get a bed that has the automatic head and feet lift so that I didn’t have to sleep on the sofa. We wanted something really comfy and my Aunt Mary recommended a Tempurpedic. It should have been a fun trip to the furniture store as it has been in the past, but this time was very different. We were trying out a couple of different mattresses and I just broke down. I was crying, and Noel kept asking what was wrong. I said, “it feels like I’m getting a hospital bed and I don’t like this. Is this the last bed I’m ever going to buy”? We stood there hugging and obviously I was upset and the sales lady at Haverty’s was putting the pressure on. I was wearing a scarf on my head and sobbing. Lady, put two and two together I wanted to tell her, but I didn’t want to walk away feeling crappy about myself. Mattress Firm is the way to go and if you’re in the Middle TN area then go to Murfreesboro and ask for Marie. She was the sweetest woman. She had shaved her head in solidarity with her Aunt who had cancer. We saved thousands of dollars AND she called the delivery guys herself and offered to make them all her delicious lasagna if they would agree to deliver the bed the next day. Man, it’s a comfy bed.
I began following a woman online who is an 18-year survivor, reading, researching and sometimes taking a break from all of it. I haven’t had many melt downs. I had a friend who had informed me that I did better than her at accepting my diagnosis than she did. She had another form of cancer and has since passed away and I always felt bad when she told me that, but I reminded her that I was pretty out of it at first and also everyone is different. The only advice I can give to those who may be diagnosed with a disease is do not let fear take over, do not think the worst and believe that you have a future and plan for it and ask the doctor, “where do I go from here” AND most importantly do not dwell on it, do not let it swallow you and take you to a dark place. Cut negativity from your life as much as possible, stop watching the news 24/7, laugh a lot, spend time with people you want to be around, slow down, reflect on the positives in your life, and let yourself feel how you’re going to feel. You don’t have to be your own cheerleader all of the time and sometimes it’s okay to talk about how you feel whether you are scared, worried, sad, happy, and let others know if you just want them to just listen or want a pep talk.
I’ve had a few bumps in the road this year, first chemo cocktail didn’t work, side effects from this chemo are bleh, a couple of new seizures, which means I still cannot drive, but I don’t want to focus on the negative things. I’m not back to my old self and I am not sure that I ever will be, but I’m the same me on the inside. I love fully, I’m grateful for every day, I’m about to turn 45, my tumor is stable, I have a great medical team, I have an amazing family and wonderful friends and I meet strangers that come up to me at times and ask are you fighting the fight and I respond with a yes and then they begin to tell me their stories. I hate the stress and pain that my illness has put on my loved ones. I hate what this has done to my kids, but they are handling it very well. Penelope told me the other day that people confuse fearlessness with courage and they are two very different things. Having no fear is fearlessness, but courage means you face your fears. She told me I am the most courageous and strongest person she knows. Parker told me that I am the strongest person she has ever known, and I told her I feel the same about her and her sister and that my mom set that example for me.
I now look at the scans, labs and appointments as inconveniences because this is our lives now and as Noel and I discussed we don’t stress out on the weekend before a Monday MRI and appointment with the oncologist, we just treat it like a day we have to do a lot of sitting and waiting and I have to lay in a really loud machine for half an hour. We have no control, so I don’t worry. My relationship with God is one of trust and that’s all I’ve got and I’m completely okay with that.
You get one life. Make it what you want it to be.
Bert SilversteinMarch 8, 2018 at 5:02 pm
Keep on rocking. Your words are an inspiration to others. Never lose hope. Dum Spiro, Spero. Hugs, Bert.
Roxanne ButtsMarch 8, 2018 at 7:06 pm
Love you friend!
BethMarch 9, 2018 at 5:00 pm
Thanks for sharing. I was surprised to see a photo on one of the groups. We share the same NO and sadly the same beast. Stay strong. Stay courageous!!
Melissa ToddyJuly 12, 2018 at 9:16 pm
I have Glioblastoma too. I hit the two year mark on May 17, 2018. I been taking Avastin and I’m heading downhill. Before that it was surgery, radiotherapy, and MEDI3457, and then I had a recurrence at 11 months, and went on something that was supposed to work but didn’t. I’m currently taking Avastin…I find out what my stats are on August 3, MRI. I used to be a lawyer…a Public Defender.
Kristie PenningtonJanuary 20, 2019 at 8:07 pm
Melissa, I hope that you are doing well.