My Story
The Journey of GBM Never Alone
A New Beginning
Peter and I were married, Divorced and then remarried in 2006. After Peter retired in 2015, we joyously planned to move to SW Florida, where we had vacationed for 10 + years. We totally updated our home, including completely remodeling the kitchen. We were ready! We listed the house and in 3 days had a full price offer. Our plan was finally coming together! As hard as it was to leave the kids and dear friends behind, we knew they would visit.
When we arrived, we stayed with our closest friends who arrived a few months before; we began searching for our “forever” home. I talked Peter out of calling it our “death” house; it sounded so morbid. He said it was the last house he would ever own, and knew it would be the place he would take his last breath. I prevailed and we bought our ‘Forever Home.’ We closed on the purchase on 9-11-2015, I felt we needed a different way to remember 9-11.
By mid 2019 things became a little weird. I had changed jobs a couple of times; I felt a sort of disconnect at times between us. I couldn’t quite put my finger on it. Peter had been to a doctor about some test results that had come back not so good. The kids came down for a visit; I tried to pass his moods off as the stress of awaiting the results of further tests. When those reports came back good, I thought we should celebrate! He was not interested. Peter would never put off a celebration for anything. We loved to entertain; he was at times more excited to see the kids than I was. I decided to just make the best of it.
sOMETHING’S wRONG
As the months went by, he began displaying some very weird behavior. Moods swings came from nowhere; he was not as fun anymore. One evening in mid-July, I came home from a meeting and out of the blue, Peter said, “We should get divorced and sell the house, you spend too much money.” I was shocked, hurt, astonished and confused. We had a very loud and hurtful exchange; I went to bed in tears and slept on the sofa.
The next couple of days were even stranger. When I got up the nerve to mention the divorce, he fumbled for words and seemed a bit surprised by my questions. The idea was dismissed without further discussion! Nothing was normal, but we seemed to be back on track. There was nothing to worry about…
By the beginning of August. I noticed he was “missing” words, or could not find the right words. In the grocery store we both spent over 10 minutes trying to figure out what spaghetti sauce he was looking for; he was frustrated that I did not understand. Finally, I realized it was a certain SALSA he was looking for… Good grief. This was becoming a new trend. It was happening more and more often. He would forget that he had planned a certain meal for dinner; when I arrived home after work nothing was started for the planned meal. More and more strange things were happening. Suddenly a thought occurred to me. Peter had a slight blockage in his carotid artery; his doctor told us to watch for any strange behavior or symptoms of a stroke! Peter promised to call the doctor on Monday, September 16, 2019.
Monday I called him while on lunch break; I asked Peter if had called the doctor. He said yes; I asked what the outcome of that call had been. Peter said e had made an appointment was made for the FOLLOWING week. Oh Hell no, I thought, and decided to call them myself.
The gift of a Bluebird early in our marriage became a symbol of us, together.
tHE rOAD tURNS
When I asked the receptionist why, with his symptoms, his appointment had been delayed, she said he had given no symptoms like those I described. She transferred me to the doctor’s assistant right away. He told me Peter needed to be seen immediately and assured me HE would call Peter and explain. My next call was from the doctor’s assistant. He explained what he had told Peter, and that Peter was on his way to the hospital – Gulf Coast Medical Center in Fort Myers. I left work immediately; I wasn’t very far from that hospital; I wondered how I would ever find him?
I called his phone; thank goodness he answered! I tried to confirm the hospital he was at ‘Gulf Coast.’ , “No,” he replied. “Where are you?” I asked. He said, “I don’t know.” Peter handed the phone to a male nurse. The nurse explained that Peter didn’t know WHY he was there; Peter thought he was in a different town altogether. “WHAAAT?” I gave him a brief explanation and he asked if I wanted him to be transported to Gulf Coast. I told him I was on my way and to keep him there.
Peter was still very confused and disoriented. I forgot to bring his toothbrush and apologized. He said, “why worry about it, I don’t have a garage!??
Now, I was really worried! How could he not know where he was, and not know WHY he was there? Well, I was about to find out. We were both about to hear the words that would crash our world, beyond anyone’s comprehension.
I was taken to his ER room on arrival. I noticed it had a door on it, not just curtains. I remember thinking this was strange. When I entered, Peter sounded childlike as he said, “I just had a brain scan!” I jokingly replied, “Well, they sure saw nothing in there at all!” We both laughed a bit, he was ready to go home. Then the nurse came in and was very consoling towards me – unusual behavior towards a patient that probably needed his carotid cleared. The nurse told us the doctor would be right in.
When he arrived, the doctor's demeanor was much like the nurse's. What the devil is going on here? I asked. “Your husband has a mass in his brain; it is cancerous.” I said, “No, you have the wrong patient; this is Peter.” Calmly and matter-of-factly he stated, “No, this is very serious; Peter is being transported to a different hospital; he needs surgery right away.” He continued, “He’s already been started on an IV and has been given anti-seizure medications – this has to be done now.
I looked at my husband, took a breath that I felt was thick as cement and said, “We will see what more the other hospital has to say.” He agreed. It was September 16th, the day I will NEVER FORGET. The day our lives changed FOREVER.
September 17 – The day of surgery. When we arrived at the hospital the night before a biopsy of the tumor was mentioned. That seems much better, not so invasive. This day I arrived at 7 AM and apparently the surgeon felt it was much larger, believing that imminent harm was a concern. When I met him, I said “DO NOT sugar coat anything for me. I need to know the brutal truth; if it wasn’t that bad, it was a blessing. He agreed. At some point he said to me, “The last thing we want to hear is “Glio””.
Later that morning, they took Peter down for an MRI; they added ‘Mapping Markers’ to aid in surgery and tumor location. He returned to the room with things that looked like ‘buttons’ on his head in various locations. THAT was when I realized the possible size and location of the tumor. It was located in the Left Frontal lobe of his brain. This would prove to be very important.
Finally about 1 PM , we headed down to pre-op. I was shaking – After all, the WAS brain surgery! We signed all the papers and met the surgeon again. We sat mostly in silence, but we held hands and he stroked my arm ever so lightly. I HAD to stay strong for him.
At 2:30 PM, I had to leave him. This was the hardest thing I had EVER had to do! I waited until I got to the waiting room and then bawled like a baby. My best friend Arnie was there with me, thank GOD!! We waited for what seemed an eternity. At about 6 PM, the surgeon emerged; he said everything went well and he got as much of the tumor that he could, but not all of it. He wanted to be sure Peter would be able to walk and talk. Tomorrow would prove how well things went, he said. I wouldn’t be able to see him until 8 PM or so; Arnie decided I should eat something… I had completely forgotten!
About 8:30PM I was saying goodnight to Arnie; I was going up to see Peter. I looked over and noticed his nurse, Amber, waiting for her ride. We chatted and then she said “OMG, you don’t know!” I think my heart stopped! What has happened??! In those few seconds, I obviously imagined the worst!
She tole me that after surgery, they do a routine CAT scan; they had found a clot forming. Peter had been taken BACK into surgery. I sent Arnie home and promised to call if anything changed. I made my way back up to the unit. There I met the Night Nurse, Andrew. What a compassionate young man. He hugged me and said Peter was still in surgery, and he would be highly sedated. He promised to call when Peter was brought back up to the room and settled. I would not be able to see him until morning; “I should go home”. It took quite a bit of convincing and a huge hug from Andrew, but I left.
Go home they said. Are you kidding me?! I could not bear to go home; I needed my people! I went to the Eagles to see my “family”. When they saw me they immediately came to comfort me. I only had one drink; just in case they called and I had to go back to the hospital. I made my way home. I was able to reach Andrew; Peter was FINALLY out of surgery. “But when will I know anything,” I asked? Andrew called me back at 11:00 PM; the surgeon wanted to speak with me. Andrew provided me with the surgeon’s personal cell phone number.
This was the worst phone call I have ever had in my life. The surgeon explained that due to bleeding and the clot, he had to remove more tissue than he wanted to. There was a chance that Peter would not be able to walk or even talk! He told me they would nurse him along as best they could. I asked, “Do you mean he may never come home?” He replied, “We just don’t know right now. The morning will tell.”
The phone calls to my daughter and brother began. My daughter Nicole burst into tears; I spoke to my son, Greg, and asked him to help his sister; my brother tried his best to console me. Not much could be done now, I tried to sleep; it was 1 AM.
Wednesday September 18, 2019:
When Arnie and I arrived at the hospital at 7 AM, they had already stopped Peter’s sedation; he was still on the “vent”. He started to regain consciousness, but I noticed he kept raising his legs because they had those compression sleeves on them. I knew he hated them. This was a GOOD sign!!!! I continued to talk to him and encourage deep breaths so they could extubate him; we would see if he could talk. At some point he was taken off the vent and he was able to say his name and mine and “I love you”!!! Oh Lord, you have answered my prayers!!!!
Then I noticed the bandages and the surgical cap. It was like a mesh covering his skull. I could tell the scar was huge, but had no idea just how big it was. Then they “whipped off” that cap and there is was! Dear Lord!!! It started at his hair line in the center and went back and around in a question mark shape, ending behind his ear. I freaked out; I had to leave the room for a minute.
By noon, his nurse Felicia had gotten him up; he walked around to the other side of his bed and back! Peter was still very confused, he kept asking what had happened.
Thursday September 19, 2019:
I am his cheerleader; no walking today and he was still quite confused. His speech was very slow and deliberate. He had to be in restraints unless I was there with him. He wanted to pull his drain and IV’s out. I met another nurse – Rey. He was huge and did not have much of a bedside manner. I learned he was filling in for Amber, Peter’s favorite. She would not be on his case today.
Rey came in to “clean up the surgical area”. He was, to say the very least, a brute. He used COLD saline, squeezing it out of a stack of gauze directly onto Peter’s head. Peter hates the cold. He jumped in response, his eyes were wide and leery. He looked at me as if to say…”Help Me!” Peter was terrified; bloody water was pouring down his face and neck. I stopped Rey from doing anything further, saying, :That’s enough!” Rey went for more gauze and plopped it onto Peter’s head. Then he wrapped it so Peter couldn’t even open his mouth.
I went to the charge nurse and had Rey removed from Peter’s case. Amber was moved back to care for Peter. She kindly told me to go outside and try to relax. When she realized what Rey had done she was visibly shaken. She assured me she would gently clean him up and when I came back he would be MUCH more comfortable. I went outside for a cigarette and a major meltdown.
Friday September 20, 2019:
Peter had another rough night. He had to be retrained again, pulled off the “condom Catheter” and then wet the bed. I felt like I was getting reports from a babysitter. He had good hand and leg strength. But, he was not a happy camper. Then he Flipped me off – Twice! I assumed he was pissed at me for allowing the surgery. Then I happened upon the surgeon in the parking lot and told him of the finger flipping incidents. He said, very sincerely, that he was sorry – he should have told me about the possibility of inappropriate behavior. He related a funny story about a past patient. He was just an amazing doctor. He told me about the functions of the left frontal lobe; Peter was not mad at me. I researched and learned a few things more about Glioblastomas; THEY ALMOST ALWAYS COME BACK. I asked the surgeon “Why on earth did you do surgery if it will eventually come back?” He assured me that he would not have done it if there was no hope. Just pray that it is not a grade 4 Blastoma.
After a valiant fight Peter passed away on March 25, 2020 at home. There was never any doubt that this would be the outcome. However, throughout the process and even more so, after it was over, I was almost haunted by the choices I was faced with. I wondered if I had been given more information, had known what questions to ask or just had a realistic viewpoint of what was in our future, would I have made different decisions? I discovered that there are a lot of websites that offer pretty much the same information but they do not address what reality was on the horizon, or what my choices would result in. Informing and assisting others became a burning desire for me, culminating in my forming the GBM Never Alone Corp.
I am actively pursuing the creation of GBM Never Alone Organization, a Non Profit Corporation that can have an even greater impact on research and development and outreach to others in need. Thank you for taking the time to read My Story. I hope you find the information useful on your own journey.
