Numbness: Glioblastoma Multiforme
What can I tell you about my mother? Plenty, she was a vibrant, nurturing, devoted mother (and wife) that greatly loved her family. Sounds like the start of an obituary doesn’t it? Mom was a homemaker that raised four children, while dad worked nights. She was the room mother for all four of us, scout leader, assistant school nurse, and PTA member. Mom made beautiful macramé wall hangings, stained glass sun catchers, lamps, and jewelry boxes. Holiday celebrations were at our house. Mom would host a great party with lots of loving family, caring friends, and delicious food. We children were made to feel very special, and important, and I admit we were a little spoiled also. In mom’s world, family came first. She was always there, for all of us, always.
During a phone call in April, 2005, mom shared with me that her right leg felt funny, sort of numb. She was driving, and couldn’t feel the push of the gas, or brake pedal. We thought maybe, it was a pinched nerve; consequently, she was going to make a doctor’s appointment. We both were not too concerned at the time.
That following Saturday, my daughter received her first communion. Mom was very upset because she was not able to come, at this point, she could barely walk. Now her right arm was experiencing the same sort of tingling. Dad took her to the emergency room, thus the previously mentioned phone call. Two possibilities: an infection, or a tumor. Given only those choices, it felt very strange to pray that my mother had an infection in her brain.
Actually, that was the original diagnosis, as a biopsy did not show cancer. We were thinking that it all made sense, because two months ago mom was in the hospital with a lung infection, and the doctor said it could have possibly made its way to her brain. Mom was sent home with antibiotics, administered intravenously. Great news! The antibiotics would take care of it, and her life would be back to normal. Not so fast. After two days, she was crying out in pain, and fainted; an ambulance transported her back to the hospital.
This event told us that it may not be an infection after all. As a family, we made the decision to move mom to a different hospital for further treatment, under the care of a well-known brain surgeon and his team. This doctor immediately wanted to perform a craniotomy because he felt it was really the only choice to get to the bottom of this. In reality another biopsy might not confirm what exactly the mass was. They were going to cut her head open, I was terrified.
What a night that was in the waiting room, the myriad of emotions, how to pass the time-play cards, talk, read, listen to music, pace-I cannot remember exactly what we did, I cannot remember how many hours we were there, but I vividly remember the diagnosis: GBM (Glioblastoma) Grade 4 brain tumor. The surgeon described this tumor as a web-like tumor that mimics the outer white pith of an orange. It really does not have much mass to it, but it has tentacles that grew deep down into mom’s brain. The surgeon told us he removed “all that he could,” and inserted chemotherapy wafers into many parts of her brain, for the purpose of destroying any cells that were leftover. Mom would need to have radiation therapy as well. Oh, yes, how could I forget, he gave her only eighteen months to live. Numbness . . . . . . . . .
At home, I frantically searched the internet for some good news in relation to this tumor; spoke with friends, talked to doctors, went to the library, there just was not any. Reality was beginning to settle in. Everything the surgeon shared with us was holding true; it is considered the most aggressive type of primary brain tumor involving the glial cells, with a short life expectancy. Numbness turned into anger, then, sadness drowned me. At this point it would take a miracle for my mother to live even for a few more years. If you can imagine this, I began to grieve for mom while she was still here.
Living twenty-five miles away, my heartstrings were constantly being tugged. I wanted to be there all the time; yet, I had my own family that needed to be cared for. A husband that was not sure what to do for me, a thirteen and nine year old that knew something was terribly wrong with their grandma, and they were crushed by the thought that she might die. The children were old enough to understand, accordingly, we spoke openly.
On the other hand, I could leave mom and dad’s house, get away from it. Every single time I left for home; anguish was my passenger. It was difficult to just put this feeling aside, and switch to a happy face. There was no sleeping. Once my head hit the pillow, my mind was racing. Thoughts of why; how; will she suffer; is she in any pain now; will she ever walk again; is mom going to lose her sight; are seizures next; did I miss some tumor information that contained good news; could she overcome this; what else can I do? What should I be doing? When will I wake up from this nightmare? With all of this, I was praying incessantly, trying to convince God that my mother’s work here on earth wasn’t close to being done. This went on night after night, I had to give in; I began taking a sleep-aid.
During those months, therapists visited and vigilantly were trying to teach mom to walk again. She had a special plastic insert for her right shoe that ran support up her leg. Mom had to use a four-prong cane in her left hand. Her right arm was weak; therefore, she was unable to grip a walker. With the therapy belt on, she could walk down the hall, granted, it was done very slowly, and she was exhausted at the end.
It would take your breath away to see her walk like that, while also bringing tears to your eyes, knowing what her life has been reduced to. On the positive side, I had to in vision that it was a tiny victory, if only for a few minutes.
My father was a man of steel through it all, although I know he had his own, private weak moments. Mom would not have lived as long as she did, if it was not for him. Dad gave her a quality of life. The only times dad left mom alone (with us), was when he would go on a lunch run. His underlying love kept him there with her. He was there, always.
Every Sunday dad would take mom on a trip. She wanted to get out of the house. They would drive to different cities in Missouri such as Washington, Chesterfield, Troy, and Wentzville, just to see what was happening and eat lunch in mom’s truck. Mom especially liked to take a drive when it was snowing. Her favorite journey was to downtown St. Louis to see the Cardinals new stadium. She dearly loved her Redbirds. Dad has expressed numerous times how he would like to take mom for a drive just one more time.
December 2005, every magnetic resonance image (MRI) since the surgery was clear. What? That meant six months of finding no cancer cells! We popped champagne at Christmas; we celebrated, partied, and wondered; could this be a miracle in the making? Of course not, you already know this story’s ending.
Mom foraged on. My siblings and I would visit during the week, cook meals, and bring the grandkids to see grandma every weekend. Then around Valentine’s Day 2006, her speech became slurred. She knew what she was saying, but we couldn’t comprehend what she was telling us. She had to go back to the doctor for another MRI.
If you guessed that the tumor had returned you are right. The surgeon was against another craniotomy; his suggestion was radial keratotomy. Mom had a metal frame attached to her skull from the outside. Yes, through the skin to the bone of her skull, so radiation could accurately hit the necessary areas of her brain. The doctor told us the procedure went well. Good news, but from my research I knew that future, possible treatments were running out. How much could mom mentally and physically tolerate? She would robotically do what the doctors told her to do; not that there were many choices.
Wearily, we traveled home that day, to this life we all knew too well, and did not like very much, with a new addition; flash cards. Eventually, this became the main source of communication with my mother, as she was only able to speak two words; “to,” and “kitty.” Mom couldn’t walk, couldn’t talk, and couldn’t write. How excruciating it was to witness all that was taken from her, and yet she was a pillar of strength and showed no weakness in front of her children and grandchildren. I also know that she did have her own private weak moments as well. How could she not?
On my daughter’s birthday in September, mom collapsed. When I arrived in the emergency room my family was told that her brain had swollen. She was non-responsive. The doctors would try to reduce the swelling, but there were no guarantees that it would help. This was the end, we all knew it. Gloom lurked all around us. Selfishly, I did not want my mom to pass away on my daughter’s birthday. We began preparing to say goodbye, when three days later, the swelling had gone down. She was back, it was incredible! This really should not have surprised us. After all, the Cardinals were making a run at the playoffs; mom was not going anywhere.
My mother went home with a new addition yet again. This time it was hospice. We chose not to tell mom she was in the end stage of her care. We continued to just say, as we had before, a nurse is here for a visit; thinking it would lessen the sadness of this unwelcome situation. I do not know if that was right or wrong, and my family never regretted that decision. Her spirits were good as she witnessed the Cardinals winning the World Series. Dad hurried her to the mall to purchase a World Champions 2006 t-shirt, which she proudly wore. It was a joyous feeling knowing that mom lived long enough to see this memorable event.
December 2006 was rough; mom was getting worse. She looked pale, thin, and couldn’t stay awake even while eating. I had seen enough, and I prayed for God to take her. My anger filled me; this isn’t my mother, this isn’t even close to living. My sister disagreed; we could still see mom, hug, and kiss her. She was right, in a sense, but it was so difficult to watch the strong woman who raised us, merely a shell of her former self.
I was with mom the afternoon before she passed, I could feel, in my heart, that the end was near. When I arrived home, I called the hospice nurse to talk about what I had seen and felt. She had not visited mom yet that day, but we both knew we were down to just days, not weeks anymore.
December 15, 2006, I remember the phone call like it was yesterday. Ring. Hello? Liz, (it was my brother) mom’s gone. Numbness . . . . .
Wistfully, we buried mom, unbelievably, the day before dad’s birthday. You can imagine what Christmas was like. No one wanted to celebrate, yet we needed each other to lean on. We did not waste time with asking why. There is not an answer that would have satisfied any one of us. My grandma lost her only child, painfully; she told us she was not a mother anymore. Ironically, we knew this day was coming, yet we were still so very devastated.
As we were preparing to leave the funeral home after the wake, dad wanted to say goodbye to mom one last time. He leaned over the casket, and he kissed her, as their four children watched. Tears filled our eyes, as we embraced one another. No words needed to be said, we could feel the sorrow, and loneliness that was ahead for dad. We would all go home to our families, and he will go home to an empty house.
I lost my best friend that day, yet, a burden was lifted. Mom was in a better place, I had no doubt. It is not so much that my mother was taken from me; I know that longevity of life is not guaranteed, for any of us. What hurts the most is what she had to bear. There truly is a hole in my heart, and on some days, even now, it feels like a cavern. As I have experienced, grief can crawl up inside and consume you, when you least expect it.
Mother’s Day, and my birthday are especially tough, I cannot seem to conquer those. Oh, the countless times I want to pick up the phone because mom always got the first call, no matter what was on my mind; good news, bad news, or no news. Her cell phone number is still in my cell phone, although, I know I have to call upon her with my heart now.