The following is an account of our story since January 19, 2013. But mostly an account of the last three months. Again, OUR story. I intend to always be respectful of others who read my writing, considering any grief and loss they may have experienced personally and never to compare situations. All of us are different in our handling of traumatic events, this is a portrayal of how we handle our’s.
In some ways I find it difficult to believe that this week marks five years since Chris had the seizure which launched us into this crazy adventure. And also, it seems it could’ve happened only a short while ago. Regardless, that’s a really, really long time to endure three brain surgeries; two spine surgeries; five separate sessions of radiation treatments; three years of chemotherapy; and months of physical therapy to walk again…
Nevertheless, we are here, acknowledging that it isn’t a celebration day, but simply one to remember. Although, if you’d ask Chris and Logan, they’d say that it is, in fact, a day to celebrate, because after being dragged through the ringer and back, over and over again, we’re still kickin’. Be that as it may.
Normally I’m pretty open about our story and the events of my husband’s tumors and surgeries, however this time I’ve held it all just a bit closer to us, as if the information we possess is very fragile. It is. I learned from a pal once that keeping it close is allowed and acceptable. And yet, I desire to write it. Not write it for me, I’m not a journalist, but for you. Which in turn ends up being for me afterall, in a healing sort of way. Five years ago I’d thought I would write a book about the first tumor/surgery that I’d call “Tear Drops and Leg Warmers.” I never finished writing it because he kept getting sick and then I couldn’t keep up. Also, for those of you new to our story, welcome. The first experience, we called “brain time.” A pretty stinking easy event, we all agree, when we compare to what we’ve grown to anticipate and endure. Never would we imagine that we’d wish to have another brain surgery instead of two spine varieties because it’s easier. My God.
In September Chris’s shoulder began to hurt. In all honesty, he had really overdone it the weekend before the discomfort came. This, for a guy still needing to be somewhat mindful of his actions since having major spine surgery just 13 months before that required many months of physical therapy to get him walking on his own again.
He tried massage, exercise, ibuprofen, and the pain never went away. He began laying on his left side throughout portions of each day because it was the only thing that brought a hint of relief. And guess what, that is what he did right before they discovered a tumor on his spine a year ago. I knew it was a tumor all along. I knew it was, but for two months we made excuse after excuse of why it certainly couldn’t be and also wouldn’t be a tumor. But when he lost the ability to lift his left arm on his own, we called his radiologist who ordered an MRI that revealed a tumor had collapsed his C5 vertebrae and two days later, the day before Thanksgiving, he was admitted to UCH in Denver for surgery which would be the following Sunday.
All things considered, this surgery went better than his first spinal surgery back in August 2016. Before he was discharged just three days later, they re-scaned (read: MRI) all previously affected areas to see if there were any other tumors hiding out in the shadows before they made a radiation treatment plan to finish off what bit of existing tumor wasn’t extracted during surgery.
I’m so scared of those scans. I can only describe the anticipation of their results as how it would feel to be trapped under something devastatingly heavy with no ability to move out from under it or even lift it. There is no help and there is no end.
A week later we met with the radiologist and found out that there were in fact four tumors on my husband’s spine. This is more than ever before. We go way back with this doctor, usually with cheerful pleasantries, but when he spoke this time, the energy in the room changed drastically. We had just gotten in trouble for waiting two months to call him and now, this wonderful man with impeccable taste in vibrant shirt colors and coordinating socks and ties, wasn’t smiling. He leaned against the exam table with his arms crossed in front of him and proceeded to tell us that there was a time when they thought they could cure Chris’s disease, but now they knew they couldn’t. The tumors are coming fast and furious. He’d be able to treat them with radiation for now, but as they return, and in places where radiation had already been, the danger of retreating was too much.
If I’ve learned something over the last five years with the same doctors with whom we’ve grown close to, its how to blatantly ask the hard stuff, exhibit frustration, cry, sass and outwardly fear that acne is from cancer. True story. Not sorry.
“Will this end his life?” I asked.
Yep, I asked the question we all feared the answer of. I didn’t think he’d answer, “Yes.”
It was time to get our affairs in order, he said. If we hadn’t made up a last will and testament, now was the time. He wasn’t a fortune teller and couldn’t tell us when but this disease (which they don’t even have a name for) would end Chris’s life. We can continue to treat new tumors with radiation, but the rate in which they are coming now indicates that the chemotherapy isn’t working and we’re out of options. Probably just pray that the skull base tumor, that has declared itself twice now and has already been radiated doesn’t come back because that’s the one that will be fatal.
He leaves Chris and I to discuss the radiation treatment that we’d most like to go with next because he doesn’t make decisions for us anymore. We’re beyond that by now. We’re flying by the seat of our pants. They give us the details, we make the decisions.
We tried to sort out our situation in the freezing cold exam room. I’m looking at my husband with new eyes. Eyes that want to grasp and hold on to every glimpse of him that they can and retain it. These new eyes can’t know how many more days, months, years they’ll be able fix on him. What about Christmases? Birthdays? Band concerts? Graduations? Weddings? Our anniversary? No longer was it just my eyes, but his eyes. His eyes would miss these things. His eyes would miss our boys growing up.
Ok, I can’t talk about that anymore.
But listen, that was the moment when I began to notice the looks of pity and sympathy from our radiologist’s resident as well as our radiologist. I wonder how many times he’s had to tell a young couple that one of them would have their life cut short by a bad hand of fate. How many times had the resident been in on that hard conversation. Were we his first?
You see these heart wrenching stories happen in the movies or tv dramas and think, “Thank God that’s them and not me.” We go about living our happy, content lives, with an occasional traffic jam, or broken furnace or whatever may be a downer at the moment. We hear the phrase, “Well, at least you have your health,” and until five years ago, or even closer than that, I thought of that often. But now we don’t. I never even really knew the depth of what that meant. At least you have your health. And so there’s this level of haziness, I’ll call it. A haze in my mind surrounding it all. A matter of denial or disbelief and I learned from my feelings doctor that the body creates those things as a means of survival because the sheer gravity of the devastation of it all is incapacitating.
For a week we walked around in the haze. The haze smattered with Christmas lights and music and decorations because we’re at the beginning of December now and it’s the most wonderful time of the year. So bring on the forcing of the smiles and the dragging out of bed in the morning and the effort to maintain any sense of normalcy that would find us. In the midst of the normal Christmas songs, on our normal playlist in our normal kitchen, Coldplay’s rendition of “Christmas Lights” came up on the rotation and brought me to my knees…
“Like some drunken Elvis singing
I go singing out of tune
Saying how I always loved you darling
And I always will
Oh when you’re still waiting for the snow to fall
Doesn’t really feel like Christmas at all”
I realized Chris wouldn’t hear one of his favorites anymore and perhaps we should play “Yellow” at his memorial service. Is Coldplay a choice of music in heaven? What is heaven like?
Again, that’s enough of that. Mostly what is ringing relevant and powerful in my mind is the experience of filling out the last part of his will and testament. The part that asks about his final moments and where he would like his remains to go upon his departure from this earth. He typed and typed and I cried and cried. I’m not sure what was worse? What he was doing or what I was doing. It’s one thing to fill out the forms upon marriage or having children or simply doing it to do it, because that’s what we’re supposed to do, but it won’t ever really matter because having a cause to actually NEED the will happens to other people.
But this time it isn’t other people. And I kept asking Jesus, is this for real? Is this true? How can this be us? Is this our life now?
How long my life would be without my best friend. I can’t do it. I don’t know how.
Spiraling and spiraling in the twinkle lit haze.
During that week, after dropping my oldest off at band practice at 7:15 am, my relationship with Jesus grew. He and I had been at odds for a very long time. I have frustration over all of this with Chris and wonder, if God is the creator of the universe and has the ability to perform signs and wonders and miraculous healings, why wouldn’t He heal my husband? Not a matter of why couldn’t he heal him, because I believe He can but just isn’t.
Yea, that was before. I feel like I was presented with a choice. Stay mad and remain hopeless OR get on my knees and PRAY. If I’ve ever prayed before in my life or believed in the power and effectiveness of prayer, now is the time to really get busy doing it.
Though the driver’s seat of my car isn’t on my knees, my voice rang out loud as I pleaded in tears to my Savior to please save Chris’s life. “I know you can, Jesus, and why won’t you? Don’t you want to see him on stage at church again playing his bass in worship of YOU?” I can’t understand it. Every morning I prayed all the way home, pleading and begging that my husband’s life would be spared.
Friday that week we drove to see the oncologist to let him tell us that the chemotherapy wasn’t working and probably get his blood drawn and whatnot. Our minds are still hazy, anxiety is working on me and Chris reminds me that the news we were given a week ago is probably still worse than anything Dr. Ney was about to tell us. This oughta be easy, he says.
And, you know, it’s a weird thing walking around thinking my husband’s days are numbered. Does everyone know? Can they tell from the looks on our faces? Is everyone looking at us with sympathetic eyes, or is it just my imagination. I feel like its plastered on our shirts or something.
I’ll never get used to the feeling of waiting in the exam room for the doctor. It’s so excruciating that when he finally arrives, I don’t even want the pleasantries. Just give it to us straight, doc. Then we can greet one another if the news is bearable.
“We have options,” he tells us as he sits down and prepares for the next hour that he would spend laying out four different treatments we’d get to choose from.