The irony that I’m finally sitting down in front of the computer to write on the Autumnal Equinox is not lost on me.
Today is the last day of the year where there is perfect balance between the light and the darkness. Starting tomorrow, there will be more darkness than there is light…
And at 36 years old, I am still afraid of the dark.
It was the same time last year that we were in the trenches of the same war, with the same disease. Last year, we were afraid because we didn’t know the outcome. This year, I am afraid because I do.
In case you missed the news, back in March, we received the “all clear”. The stage 4 lung cancer was in remission and we had our miracle.
There was much rejoicing amongst family and friends. I must admit, that I never allowed myself to completely be content with this new idea. I don’t know if it’s the scientist part of me that needed someone to lay it all out in front of me to believe, or if it was typical Stephanie to never quite embrace happiness because of the fear of having it ripped away. It’s a protection mechanism I’ve perfected. I want to do everything in my control to prevent a blindside…but as we all know, life is made up of the unpredictable.
On Thursday, August 27, three days after my mother’s 60th birthday, I accompanied her to her PET scan follow-up with an uneasy feeling. Sure the previous three scans of her lungs were clear, but this was of the entire body and mom had been having some health troubles and pain unrelated to the lungs. That morning, with my sister on speaker phone from Kansas City, we received the news that we were dreading: the cancer had metastasized. The lungs were still clear, but it had spread to the lymph nodes of the lungs and in her abdomen, into the bones of her femur and pelvis, into her spine, and a small spot on the brain. The following Tuesday they were to perform MRI’s of her brain and pelvis to get a closer look and develop a game plan. We had hope. We beat this once; we could do it again.
She did get her MRI on Tuesday, but not in the way that was planned. I had been gone all weekend shooting and picked up the kiddos Monday after school and headed home (for those of you who didn’t know, I moved in with her). When we arrived, I found her despondent, confused, and repeatedly vomiting. Emergency. The babies stayed with Papaw while I somehow got her to the car to speed there.
It was alarming…she was confused…she didn’t know the month…she kept pulling out her IV…she stared into space almost the entire time…
She had an infection…her WBC was 24,000 so she was septic. We thought we had the culprit nailed down. Then the results from the CT scan of her head knocked me back into my seat. Her skull was full of tumors that were bleeding. Surgery had to be done immediately. The doctor told me to call the family as there was a good possibility she may not make it. Papaw didn’t answer the phone. But my brave little Claire did. I gave her the watered down, kid appropriate version and she went into his room, woke him up, and told him what was going on. She’s so brave. It was like a scene out of a movie: personnel rushing around the room prepping her and them trying to rush me out because they were going to intubate her. I said not before I had some time to pray with her. Claire also snuck in a Facetime with us to tell my mom she loved her. Even over the fear of what was going on, my heart was overflowing with love and pride over the strength of my little girl.
Before I left the room, the neurosurgeon asked if I had any questions. I asked a question about the blood thinner she was on because she had developed DVTs a few months before. He stopped cold. It didn’t say in her charts that she was on blood thinners. That changed the entire gameplan. They gave her Vitamin K to clot her blood and hopefully stop the brain bleeding, an antibiotic, and steroids overnight with the plan of an MRI in the morning. All we could do was wait and pray.
Morning came. She was holding steady. She had her MRI. We waited some more. I walked out to call my sister and when I came back in, she said, “Did they tell you that there is no hope?” I asked who told her that. She replied, “That man did.” There was no man. There was a team outside of her room in ICU and I asked them if someone had been into see her. They said no. But then they asked me to have a seat. That’s never a welcome request in a hospital.
“Your mom’s one brain tumor from two weeks ago, has multiplied into six large ones. There will be no surgery. There are no more treatments. We are guessing she has 2-4 weeks to live.”
“You never know how much you really believe anything until it truth or falsehood becomes a matter of life and death to you.” – C. S. Lewis, A Grief Observed
What would you do if you were only given 2-4 weeks to live? How would you spend those precious seconds? Would you travel? Would you want to embrace the ordinary at home? But more importantly than how, is the who…with whom would you choose to spend that time?
Chrystal was on her way light speed from Kansas City. I made several difficult phone calls but chose to tell those closest to her in person. I felt so unworthy and inadequate to deliver such news. I thank God over and over that the doctor came in with me to tell her. The steroids and anticoagulant were doing their job; she was having moments of lucidness. And this was one of them…it’s the most I had seen her cry, I think, in my life. She didn’t want to leave us. She worried about us. She wasn’t done enjoying my kids. So many things left to do that will never be done…
I cried myself to sleep beside her in the recliner…it was the first wink of sleep I had had in 36 hours. When I awoke, the most kind nurses were giving her a sponge bath and my mother was beaming. She said, “Look! I found Chrystal!” She had confused one of the nurses for her. I couldn’t handle it. How could she not know what came from her own flesh and blood? What a cruel disease.
Chrystal arrived to the hospital at 1am…we only talked a bit but mostly just sat in silence together…there weren’t any words that could have been exchanged to wrap our heads around what was happening so quickly in front of us.
She took the place of vigil beside my mother’s bed and I rushed home to see my sleeping babies. How was I going to tell them?
I kept them home from school the next day. When I started to tell them, Claire said that she already had a feeling Mamaw wasn’t going to live very much longer. Being a mother and watching your child process news like that is something I wouldn’t wish on my worst enemy. I question all the time whether I did it the right way…did I say the right things…all I know that I did right was hold them while they cried. News came from the hospital that they had stepped her down into a regular room so the kids could see her. It was a very quiet ride to the hospital. I wonder what they were thinking. My question of such was always met with the infamous, “I dunno.”
I feel it important to point out the kiddos’ facial expressions…what are they thinking at this moment? What are they feeling?
Claire made mom her own version of “Guess How Much I Love You” which ended with “I love you like a circle with no beginning and no ending.”
I had to remove the cross necklace that Chrystal bought for her when they started the testing on Monday night. That day, it went back on the rightful owner.
The hospice staff interrupted our visit to begin the business part of bringing her home to die…
Wow…were we up to that responsibility physically, mentally, emotionally, and spiritually? Could we do this? It wasn’t going to be perfect…we were and are stumbling…but we are putting every damn thing we have into it.
“It is harder when I think of hers [suffering]. What grief is compared with physical pain? Whatever fools may say, the body can suffer twenty times more than the mind. The mind has always some power of evasion. At worst, the unbearable thought only comes back and back, but the physical pain can be absolutely continuous. Grief is like a bomber circling round and dropping its bombs each time the circle brings it overhead; physical pain is like the steady barrage on a trench in World War One, hours of it with no let-up for a moment. Thought is never static; pain often is.” - C. S. Lewis, A Grief Observed
That night I came back and it was the three of us…alone for a few hours…mom’s mind was back to her old self. It was hard to think she was going to die when she was improving. We evaded discussing the obvious and tried making a pretty selfie. I think there may be one good one in there?
The next day, she came to her physical home to begin the journey of her going to her permanent home.
For now, she’s holding on. She’s slowly getting weaker. Symptoms are slowly getting worse. Her pain is increasing. But we are still here. And we are still thankful for each and every moment and for each and every one of you that has reached out to our family. We are surrounded by love. And words cannot thank you enough.
But the night is here…
And the rest of the year will now see more darkness than light…
But there’s still light.
Even though it may be lessening, there will always be light.