Its been a long time since I last wrote. I wish Chris’s brain wasn’t the only thing I wrote about anymore. But it seems to be. It’s OK. Since I published my last post, its been six months and 3 days!! I wanted to write last week. I tried, but the impending news from Chris’s oncologist, Dr. Ney, was just too heavy that nothing was coming out but angry gibberish. At least today its not as angry and hopefully not as much gibberish. There might be gibberish. You’ve been warned. I even thought for a moment about all the stories I wrote last spring about our brain tumor adventures. You remember, the adventure-filled tales staring Chris as the Amazing and me as his trusty sidekick! I’ve left so many of those stories unfinished that I’d really like to tell, but the possibility of another chapter with yet another adventure before us overwhelms me and makes my mind struggle to know where to pick up or leave off or even what to prepare for.
Were we just that good as stars in the previous two shows that God simply had to cast us again? Seriously, I think its time we retire this career….we’ve got real plans for a new one.
Oh, before I go any further, I suppose it would be a kind gesture for me to give the low down of what’s surfaced involving my dear, sweet husband’s health. And, by the way, the angry part of me that shows up sometimes, times like this, wants to shout that last sentence because I’m mad that I can’t yet write about how we’ve finished the journey.
I digress. Here’s the scoop. Over two weeks ago, we drove up to Denver to see the results of his most recent MRI scan. We found out great news! The tumor had cowered away from the work of the Chemo Therapy pills so much that it had stopped growing completely and actually reduced in size even a little bit more than the previous scan three months ago. Dr. Ney felt completely comfortable taking Chris off of the chemo pills and laying that one to rest (even though he will still be scanned every three months to make sure its still dormant. I’m OK with this). It is big news as it means no more fatigue, no more icky belly and he is free of that med in his body! Wow! Awesome! We have so much to be thankful for! What a great story of succ…..Oh what’s that, doc? Except there is another spot that’s showing up on the scan located in the back of his head at the base of his skull? And you don’t know for sure, but it might be another tumor?
Yea, that’s right. And, after having our party with clouds over it for two weeks while waiting and worrying, at last, on Tuesday morning this week, Dr. Ney, along with an assemblage of other brain doctors, all studied the scans of my husband’s brain at great length in a meeting they call, Brain Tumor Conference. This is where and when they convene to discuss their patients and how to help. All of them together could not determine if the spot in question is actually another meningioma (tumor) or something else because it doesn’t exhibit any characteristics of one. I think this is crazy. But, whatever. On the one hand, I hate that Chris made his way back into their limelight (certainly not his first time there, I happen to know) but then on the other hand, these are the smartest minds in neurology at University of Colorado Hospital and if he has to be in someone’s limelight yet again, I concede that I’m glad it’s in their’s. So, do what you want with that. And, ha! My husband has always amazed them in the past with the tumors that his brain produces (its horrible, I know) and stumped them with his awesomeness. Has he done it yet again? Without even meaning to?
An appointment has been set up for us to meet another doctor on Monday morning. He is a skull base neurosurgeon and will talk to us about this mystery spot and the options he’d like to present. So here’s the thing. Basically, since they don’t know if its a tumor or something else (uh, what’s the something else, please?) we will talk about if we wait and watch it and risk symptoms evolving? Symptoms of a spot in that location would include weak tongue movement and weak shoulder movement. OR, since he is without symptoms now, would now be a better time to surgically go in, look at it, sample it and determine what it is? And I admit that my initial reaction to another surgery is that I might have to call BS. Truth be told. Right there in the new doctor’s office. I might even wave my finger. You know this only happens sometimes, on important occasions. And, right now the only one I trust in my husband’s brain is Dr. Breeze. Bleh.
Also, I can’t help but notice how casually I speak about it now. When telling some folks, I’m using terms like getting more deets on the info and all the big brain words roll off my tongue with such ease and I’ve learned more than I ever wanted to learn about brain stuff. I would have gone to school for it if i were that interested, thank you very much.
I’m going to digress again.
Let’s get back to where we might’ve been. I wont say that everything happens for a reason and this is just our path and blah blah blah. Because I don’t buy it. Ok, yes. I do buy it, only a little, and I’m mad, so therefor unreasonable. Lets just be honest here, friends. No one deserves this. I get that. But, and I’m biased, especially not Chris. And I ask, why must he continue to have something wrong in his brain. Why must some spot, tumor or not, continue to show up in there? And who am I asking? God? Yea. ‘Cause no one else has an answer. It’s a giant question mark and we think we’re doing all the things right. Chris shines the light, people. Is it not bright enough? Is it me? Is mine not bright enough? Do I have more to learn? Our devotional says that when you draw close to Jesus, the light of His presence shines brightly upon you. I know this to be true. But am I to understand this as us not being close enough yet? And, how do I do that?
I just started reading a book who’s co-author confessed to not feeling comfortable enough publishing her blog posts all the time because in them they confessed her doubts about God’s plan in our lives and how she’s often mad at Him. Was she afraid of judgement from others? Others who know her as a Christian believer and yet, she has times when she doubts His goodness and intention? Yep, I think so. But isn’t that part of the journey, anyway? A dear friend of mine told me 10 months ago, after my husband’s second brain surgery, that I should get mad at God and question Him and that its perfectly OK to do that. God wants that in fact. It’s what draws us closer to Him and allows Him to comfort us. This same friend reminded me, would I want a life without God in it because I’m so angry with Him for letting this brain tumor affect my husband’s (and his family and friend’s) lives yet again? Or, do I want a life with God still in it and Him being the one running our show and offering us hope and grace and mercy and forgiveness. It is truly like a human parent/child relationship. A child who doesn’t like the rule that his parents set or the plan that they’ve created will scream and shout and wave the fists and object, but said child never actually leaves his parents over it. Ultimately, and in hopefully most cases, the parents have the child’s best interest in mind, but the child can’t know that or understand it until after, or later, or way later, or until they themselves are a parent. I have to keep putting our situation in that kind of perspective. All of my crying and shouting through my teeth and the clenching of my fists and slamming of our cupboards and bedroom doors (yes. sometimes. truth) is my objection at God for letting it happen. And then, I soften, but only just a little and I am reminded that He is there for us and won’t let us fall. I think, “How can I possibly, possibly, endure another adventure in brain stuff with Chris? Haven’t we done enough of it in almost three years?!” And then I look at the tattoo on my arm that says, “Be Brave” and I recall the depths that Chris and I have trudged through together already and I give him a fist bump because this, my friends, is how we do now. We are brave. There, I admitted it. And, I believe it, too. Because if we weren’t brave we’d be in a helluva worse place than we are right now. We have done it. And we have risen above it. And if we have to do it again, then we will and we’ll tell the story after its done, all the while dusting ourselves off and straightening back up and being Light shiners.
Boy, I do sound really healthy, don’t I? Hold on…Yea, I just checked. Its still me writing this.
But, I’ll tell you something. I’ve grown up so stinking much since January 19, 2013 (seizure day). I didn’t want to, though. Not at all. I thought I was grown up and I was, but not like this. I look at old pictures of Chris and I and Logan and Eli and I grieve the loss of innocence that we lived so blissfully in. I actually shed tears when this happens. Because it hurts my heart. There is a lyric to the song Cecilia and the Satellite by Andrew McMahon that says, …“How a face can change when a heart knows fear…”
Mine knows fear. Real fear. The fear that shows up when I’m trying to fall asleep at night and tells me that my husband is going to die and then forces me to imagine a future without him in it. My fear shows me images of sitting and crying with my friends and family over the loss of him in our lives. Real fear. Because brain tumors and brain tumors with cancer in them walk the line of life and death. And, yes, I’ve gotten dark here for a minute, but what’s the point if I’m not being real. It is real. I’ve gotten better when relating to my fear and we do have smiles more times than not, but that real and that hard are still very present, like daily appearances.
So while we rejoice that Chris is off of chemo therapy now and delight in his normalcy because he has no physical symptoms of anything wrong, we wonder what remains in store for our future. Our pal recently compared our journey to that of hiking a giant mountain and reaching a false summit. For the locals reading this, lets picture the Manitou Incline, but any mountain will do. We’ve been hiking our mountain for almost three years. A couple times we’ve run out of water, as it were, and the temps got really hot and and we lost our breaths and conditions seemed unbearable, but we kept going and it was OK and we enjoyed the scenery and the time together and just recently we thought we were about to reach the summit. We’d climbed over the hard parts and bruised our knees plenty, even developed some blisters, but we really thought for sure that was the top right ahead of us. We made our way there, prepared to fall onto our knees and rejoice over our giant victory, but, actually, come to find out, it was only the false summit. As on the Incline’s false summit, we still have 200 more steps to go. Our pal said to me, “Jen, this is your false summit. The top (end) is in your sights. Let’s believe that you only have 200 more steps to go.”