I remember more than nineteen years ago, being unable to sleep the night before my wedding. Part of the reason was that I spent that night in a hotel with my family, and my younger brothers stayed up late watching Beetlejuice on television in our room. But the main reason was anticipation, knowing that the next day's event would change my life in a big way.
Tonight may be another sleepless night. Insomnia is hardly a novelty for me, but once again there is that anticipation, knowing that things will soon change for me in a big way. At least with my wedding I already knew that life was changing in a good way. This time things could go either way. The next couple of days will be highly pivotal for me as I reach the end of my current treatment protocol.
I leave early tomorrow morning for yet another trip through the MRI tube. This is followed by a merciless wait until Tuesday morning, which is the earliest my doctor is available to read the MRI results and deliver the verdict. I will either be NEDP (no evidence of disease progression) for twelve consecutive treatment cycles, which would mean great things for me (including a reduction or possibly even a suspension of treatment). Or I could have a new battle on my hands. Either way, it will be significant.
Naturally, I can't help but look for clues that might tell me how my cranium might be doing. It's like I was many years ago, undergoing infertility treatments, and being obsessed with signs of pregnancy (as if there are any noticeable signs three hours after conception). Yesterday my husband caught me making faces in the mirror as I tried to confirm facial symmetry. I managed to teach my Relief Society lesson today in church, and I even sang the hymns from memory (both positive signs of neuro function), but I couldn't find the music I needed to direct choir practice, and I had the usual "where are my shoes?????????????" moment.
(I think my husband is going to put "She went to find her shoes" on my headstone. I have many proud Brain Tumor Savant moments of brilliance, but I can't leave the house without my ritual of stomping through it, looking for my shoes. I have a lovely shoe organizer in my huge and disastrously messy closet, but I still run around with two mismatched shoes, saying, "I know there's another pair just like this somewhere, ha ha!")
The truth is that I'm completely useless in giving myself clinical indications of how my head will look on the inside. I'm too much like my whole-brained, quadragenarian peers and fellow parents of young kids. We have our good days and then we have our bad days where we're looking for shoes so our kid Whatshisname can get to school on time. Plus I had no symptoms last year when the MRI picked up tumor progression. I'm just going to have to wait and be patient until I get the real news.
I kept thinking to myself today, "I'm either living or dying." And then I had to correct myself: I'm living AND dying, just like I was from the moment I was born. Just like we all are, regardless of MRI results or lab results or professional opinions. Life is a terminal condition, so all who have life are eventually dying. Meanwhile we are living, and what we do about that -- whether we just sustain a heartbeat or whether we really LIVE -- is a choice, and it is one of the things that we can still control, even when everything else in life seems so out of control.
This situation is out of my hands. Things are what they are, and the MRI will just reveal what already is. I believe that things are probably as they should be -- whatever that means in the Lord's good will and plan for me.
It still may be a sleepless night. It still may be a suspenseful and emotional couple of days. But I am armed with the knowledge of Who is in charge, and with this situation in His hands, everything will ultimately be okay--no matter what the path will look like for the next leg of the journey. And I know that, once again, I will feel the sustaining strength of many prayers on my behalf.
I just need to find and lay out my shoes before I try to go to sleep...