Candace
This post was going to be about sunshine-y things, rainbows and even a feel-good recap of how Chris and I took on Capitol Hill this past week. I am sorry, but it won’t be any of that. At least not this week. I celebrated the success of a fantastic Advocacy Day last Thursday. After a long day of advocacy work, my day concluded with heavy handed wine pours with friends, high-fives and fist bumps. Afterwards, Chris and I hopped in the car (easy folks, he was my DD) and headed back home from DC. I was soooo not great company, I slept the entire way home like an a-hole, completely oblivious of what Chris was going through on the drive.
We pulled into our driveway a little past 1 am. Not concerned with our luggage I left in the car or removing my make-up, we barely said a word to each other and hit the pillows hard. I woke up that morning and jumped in the car to make a “thank you for driving” Starbucks run, when I noticed my car was a mess. Part of that mess was a frantically ripped open box of Tylenol in the door panel which I thought was odd.
After Chris woke up I asked how he was feeling. His response froze me. Really, it was because I had heard these words once before:
“I have double vision again… and a headache that is seemingly familiar with when my brain tumor was there. I am going to give it day or so because maybe it may just be fatigue and if not, I’ll call my neurosurgeon and see about getting an MRI.”
The Wednesday that followed, Chris had an appointment with his optometrist. When the eye exam started the Dr. immediately noticed his difficulty in focusing both eyes and a few other things that as they put it, could indicate that something more serious is taking place. 8 days after he first felt them, his symptoms are still there and we wait. We wait for what seems like an eternity for our appointment at the Couric Cancer Center in two weeks. We are pretty good at waiting but damn, this kind of wait opens old wounds and has already made my mind spiral down dark super sad places I never wish to experience. I remain hopeful, telling myself that it’s probably nothing. Yep, it’s going to be NOTHING, so stop worrying Candace. Then I look at Jellybean, thoughts of worry pour across my heart and drag me down like an anchor. What if Chris’s tumor has regrown? What if his neurosurgeon tells us he needs to have another brain surgery?
Things are different. Long before the lightning bolt of infertility struck us, life handed us Chris’s brain tumor and 2 craniotomies. We are older, we know what lies ahead if the MRI shows regrowth, and we have a child now. All three of these factors make the next few weeks ahead terrifyingly uncertain. I smile and I have that hope that everything will be A-Ok, but deep down behind that smile, I am sobbing and shaking emotionally, trying to silence the “what ifs” that are screaming in my head. So I sit. I wait and I worry.
Chris
Focus. Lean forward. Lean back. Blink hard. Don’t ruin Candace’s victory nap. Don’t fail your responsibility to get home tonight so you all can pick up Jellybean in the morning. That is what was going through my head driving Candace and me home from Advocacy Day. It was late, dark, and there were tons of cars out. I needed to get us home though. As I was trying to concentrate on the road in front of me, it started to blur, multiply, and separate. Then I would squint, blink hard, shake my head, rub my knee. Temporarily it worked. My “single” vision would return. As quickly as it returned though, it went away. I went back to trying to convince my eyes to cooperate. I had more than 100 miles to go.
All kinds of things were running through my head that Thursday night. Was I being foolish to try to keep driving? Should I wake up Candace to see if her wine-smile was gone enough for her to drive? Should we just get a hotel and figure everything out in the morning? Those were the easy thoughts though. The harder thoughts of what does this mean for my brain tumor, does this mean another surgery, will I still be able to be a husband, a dad. Those thoughts were only on the fringes of my conscious, I was having to navigate toward what was changing between 2 and 4 cars and road lines that were shifting on me (as a side note, it could have been an interesting video game). At one point, the headache from straining got to be too much. As Candace mentioned, there was some road Tylenol involved. What she didn’t see is that I also bought a glazed donut, a bag of candy, and a large cup of coffee. I was struggling to keep my vision together and, aside from being tired already, that effort was exhausting. I went into that gas station with the thought that anything I can do (eat) to get us home in one piece was worth it.
We made it home. I didn’t mention anything about my difficulty that night. Candace worked so hard in her role as chair for Advocacy Day, I didn’t want to tarnish even the last moments of her day. The next morning though, I came clean. The symptoms, I said, were not too different than they were prior to my brain surgery. Maybe though, I am still just really tired. Maybe a bit more rest would make it go away. Well, when that didn’t work, those hard thoughts I pushed down while driving home took center stage. Now, I had to act. To get to the bottom of what was going on. That means puttin’ on my ‘big boy pants’ and facing the reality that my brain tumor may have come back. I called UVA and they, awesomely, made appointments for me to get an MRI, be seen by a neuroopthalmologist and a neurosurgeon all in one day; and only two weeks after the day I called.
So now, we sit. We wait. We worry. I find myself questioning whether my symptoms are real. I think I don’t want them to be real because that future seems easier. It isn’t my future though. The symptoms could be something relatively easy to fix: bad glasses, tired eye muscles, cranky cranial nerve. It could be that foreboding “T” word though. “Phil” could be back which, honestly, I still can’t quite bring myself to face. I keep watching my vision split and separate and almost dare it to stay that way. Some sort of masochistic thought of, the symptoms better be severe to warrant all this attention. We will know what our future holds soon. Hopefully, we will have some kind of answer about how much we should worry, how serious my symptoms actually are, how upended our lives will become. Until then, we wait, I take ibuprofen and watch my world literally get more complicated as we get closer to our appointment.
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Mallory Halverson says
Oh Candace and Chris, I am so sorry to hear this. What a serious stressor. Please keep us in the loop. I’m praying for you. And I really hope this time goes by fast so you can get your answers. <3
Candace says
Stressor YES but new territory NO. I think that helps…maybe? Either way what the hell is up with the two week wait trend? UGh…Thank you Mallory for the love and prayers.
Katie Davis says
You both are in my prayers. I am so sorry that this is what you are going through right now, because even if it is nothing, the worry and weight that you feel is real. It’s not the same but I have a chronic heart condition and one of our attempts to have a baby put me on the transplant list. I’m OK now, but I can only imagine how overwhelming and upsetting it is to stare down that path again.
I have been following your blog for years. After five years of trying to build a family we are navigating our own surrogacy journey right now (17 weeks pregnant, fingers crossed). You both inspired me. I made my husband watch your True Life episode. I wish there was more that I could do then pray for you, after all of the inspiration you have seemingly given me. But it’s what I’ve got, so I’m on it… And I’m Catholic, so I’ve got praying down. Rosaries, Novenas, and candles coming your way. Take care, Katie
Candace says
Katie such a incredibly sweet comment. Congrats on your own surrogacy journey! It’s quite a wild ride but sooooo worth it. Bless your pregnancy and your surrogate! Will you keep us posted??
Sarah D Rollandini says
So sorry for your uncertainty and anxiety during this most difficult wait. Thinking of you both and hoping/praying for good news.
Candace says
Thank you Sarah!
Chris Taylor says
While I’ve only met you once Candace and have known Chris for just a very brief time, it’s more than long enough to know what special, caring people you both are. I can’t help but feel that as much as God blessed you with that beautiful child of yours, He also blessed that child with TWO wonderful parents. You are and will continue to be in our thoughts and prayers.
Scully