What are we doing about it? He's maxed out the accessibility options on his iPhone to enable him to use his phone. With inverted colors he's able to discriminate the number of emails he has, who sent him a text and who is calling. The voice over option reads his texts and emails and describes emoticons so he doesn't miss a thing ("smile face with heart eyes" is one he frequently hears from me). He can dictate his texts and hear them back to edit for accuracy. We're waiting on a smart pen in the mail which will record his lectures in class and "track" them based on a few key words he writes on its special paper. He's working with the disabilities office at GW to learn about and access additional accommodations to help him to take exams without reading or writing. As for tv, he's relying mostly on listening to voices and commentary along with making out shapes and colors to recognize characters. Most of the time I'll provide the missing details so he can keep up with the plots. I've reached out to some of my therapist friends and am gathering ideas for tips and tricks to make life easier.
Is Dan frustrated all the time? Unfortunately, his vision is interfering with every single aspect of his life and impacts everything he does. So, yes, he experiences a high level of frustration trying to do just about everything. Fortunately, our Danny is a remarkable guy and is facing this with whatever shred of positivity he can muster. Around the apartment, I've adapted the furniture/lighting/seating to accommodate his changing vision. I try to ward off some frustration by "setting the stage" on tv shows and commenting on non-verbal nuisances. I often read texts, dial phone numbers, enter google searches and navigate through TiVo. I know it's not helping him become independent, but we haven't quite surrendered to this being a permanent thing so it works for now.
What is the prognosis? No one knows. Our medical team decided to discontinue further chemo into Dan's brain fluid in hopes of allowing the "fog" to "clear" and Dan's vision to return. No one has been able to give any sort of percentage or chance that that's even a possibility. So since chemo treatment was preventative to this point, we agreed that the risk of cancer developing in the brain is less a priority/risk than addressing the vision changes right now. Time will tell.
Is anything going well? Yes! Dan is on a break from IV chemo and we are thrilled. His energy is better, he's eating better, he's steadily gaining weight, and he's getting stronger each week. The nerve damage in his hand has mostly resolved and Dan is recovering some of the dexterity in his fingers. The neuropathy in his feet comes and goes but is manageable at this time. He is working with his physical therapist to improve his balance and leg strength to support his 6 foot frame on too few pounds. Dan's bloodwork has looked great each week and his organs continue to be "happy". His hair seems to be sticking around for a little while longer and we're enjoying his healthy look. Dan's gone to church with me the last several weeks and is getting out and about to run errands without becoming exhausted.
Friday night we celebrated Valentine's day. Holidays are always especially special because we know that, for us, sharing them together is a gift we almost never got to open. It's been almost six months now since Dan got sick - well, since he got really sick. There is a lot I remember from that day in the ICU at Georgetown when the doctor informed us just how sick Dan had become. But what I most vividly remember is my sense of loneliness. Dan is my person. When I'm sad, scared, happy, excited - he's the guy I tell. And in that moment, I was alone. Not literally, of course, because my family was there, but there was no one I wanted to talk to in that moment besides him. I am so grateful he woke up. I am beyond blessed to have him to share my feelings, to hug, to hold and to love. Dan is a miracle. He's come out of more relapses, more treatment, more hiccups and more close calls than most people with leukemia do. He may be a littler worse for the wear physically, but he's here. He is Dan. And I have my guy. When so many people are left feeling lonely on Valentine's day, I got to spend mine in the arms of my husband.
Despite the fear, in spite of the challenges, I have my person.
Dan is cancer free and ALL is well.
|Valentine's sushi, strawberries, smooches and smiles|
|Behind the wheel at last|