Answers Bring Questions

I've been putting off this post for two reasons: 1) I wanted to write with answers and a plan for moving forward and we have neither of those yet, and 2) I have frankly, been too exhausted to sit down at the computer to write. Sadly, we don't have a real treatment plan yet and we don't have solid answers about what's causing Dan's vision loss.  The latest and most agreed upon theory is toxicity, damage from all of the hundreds of doses of toxic chemo Dan's needed to treat his recurring leukemia.  We don't know what treatment, if any, is available to resolve these issues.  

"The moms" visits are back in full effect and we have been maxing out our resources asking for rides to rehab and appointments.  I continue to leave my home life at home and find joy in my students and colleagues at work.  Dan continues to work hard to complete his daily living tasks and make his way to countless doctors across the metro region almost every day for tests and procedures.  Doctors who seem to pass the ball to someone else.  Doctors who confirm (and I use that term loosely) what his vision loss is NOT and order more tests/consults with more specialists.  Doctors who are very nice, very sympathetic, yet very perplexed by Dan's symptoms.  Dan just doesn't fit into a medical mold anymore.  

We are beyond frustrated, overwhelmed, upset, and defeated.

Dan still can't see.  It always looks like it's dusk outside, people's faces are blurry, and he makes out only shadows and shapes around him.  He can't differentiate colors well, as he mostly sees in earth tones of brown, red and green.  Of course, with NCAA March Madness college basketball coming up, he is devastated to have to rely on listening to commentary to follow along with one of his favorite sports competitions.  I point to the foods on his plate so he knows whether he's sticking his fork into a tomato or a ravioli.  His vision loss is impacting him every second of every day.  It is terrifying.

Now, this is Dan we are talking about.  This is happening to Dan and Hanna, the "we find something good in every situation" couple.  Sure, we have successfully found activities that don't require vision and have fleeting moments of, "We can live like this.  We can do this".  Now let me throw in a wrench.  Dan's lost quite a bit of hearing in his left ear in addition to a constant buzzing that won't go away.  His lower body seems to be making slower than expected progress, if not a regression (he's having his third MRI in two months this week to look at his spinal cord for an explanation of that).  He has the most extreme dry mouth you've ever seen so eating has become a chore. There is residual nerve pain/neuropathy in his feet to the point where he can't feel his left toes at all.  He has fallen several times in the last several weeks so he is in constant pain from bruised ribs, bruised knees, scuffed up elbows and shoulders.  Life is hard, to say the very least.

Anybody who knows Dan, even just a little bit, knows that he is the kindest, gentlest and all around most positive person you know.  That's why he has over a thousand Facebook friends and that's why there are several people who call him their very best friend.  If you know Dan, even just a little bit, you know he loves the movie The Shawshank Redemption.  If you've ever been to Dan's childhood home, you've seen  the quote in the kitchen he wrote in high school.  You've read the quote that his mom hasn't had the heart to erase in almost fifteen years.

"Fear can hold you prisoner, hope can set you free." Andy Dufresne

Fifteen years later, this quote has a very different meaning than it did for senior in high school Dan.  Today, we live in constant fear that this vision loss will be permanent, that leukemia will return.  We're scared there won't be treatment to restore Dan's hearing.  We are buying a power wheelchair and we're scared that Dan will need to rely on it for quite some time.  We're scared when Dan coughs, when he sneezes, when he throws up, when he falls, when he's tired.  We fear every word that comes from the doctors' mouths and brace for those words to be the worst.  It is impossible not to be scared.  We have heard the worst out of the doctor's mouth.  We have rushed to the hospital over a cough and a sneeze.  We have experienced fatigue being leukemia and a cough turning to a coma.  Over the last five years, all of these experiences have lead us to live in the very real fear of the worst.  We have been conditioned to be on guard every second of every day.  We long for the days when this wasn't our life.  When a little thing like a cough, a sneeze and being tired were "just because" you had a cold or a long day.

We refuse to be held prisoner.  We hope for a cure.  We hope for restorative treatment.  We hope for a happy future together with a house, with kids, where a cough is just a cough.  We hold on to hope for a day that we take a nap because we stayed out too late the night before, not because our brains are tired from all the stress.  We have each other and we have our family.  We have the best friends who have continued to support us and love us no matter how distant we've been.  I'm blessed to have found my best friend in my husband.  I admire him for the way he suffers so gracefully.  There is nothing I'd rather do than care for him and help him get to our future.

Of course, there are days where we feel locked up in the prison of fear.  But hope is the key.

Today we are feeling the sun, holding hands, and telling stories about what is to come.

All will be well (with hope).