You'll Be Okay

Hello. It's me. It's a rainy Saturday during March madness, I've got nowhere else to be.  The closets are organized, Rice Krispie Treats are made, taxes filed, and I'm feeling a bit sentimental, so here I am. Back at the blog.

Last I wrote was November 2014 - six months after Dan died, about fifteen months ago now. The title of that blog said I was coping and when I think of that time, it's the perfect verb. Since then, I've moved forward (as we say in the biz) and I've accepted Dan's death, I've found the new me, the widow me, the single me, and I like her. I got a grief counselor, bought a new bed, new furniture, strategically cleaned out Dan's things from our drawers and made them mine. I rekindled my social life. I started dating. I'm okay. And I'm making Dan proud.

Grief is an evolving thing. It's cyclical and predictable. It's rational. But it is erratic and abrupt, too.  I had a fever yesterday. I went to the closet, grabbed the canvas bin off the top shelf, and set it on the table to dig for the thermometer. About a second after I put it in my mouth, a thought hit me - "the last mouth this was in was Dan's" - and I welled up with tears. I had a low-grade fever, but that suddenly became a low priority as I rummaged through the rest of the bin to force myself on a walk down nightmare lane. Syringes to administer medication, a small plastic bin from the hospital, about ten rolls of medical tape, various vitamins, thermometers, and some supplies to care for Dan's port were just lying there. They've just been sitting in that bin for almost two years now. That thermometer used to be a fixture on our coffee table, that tape a staple of our daily port care routine. And now they're just reminders of a life I can hardly relate to anymore. I could have thrown it all away, but I didn't. The canvas bin is back on the shelf, exactly how I found it.

That low-grade fever, that brief glimpse into my old life, sent me into a grief relapse. When these happen now (thankfully much less often than before), I tend to scroll through old pictures on my phone and re-read old blogs. The difference in how I feel grief now from in the first year or so is that I have more control over it. I don't necessarily know when it will come, but, when it does, I can control it. I have a plan, I feel the grief, and then it passes. I text one of Dan's friends to say how much I miss the old days or I call someone to reminisce. I write down my feelings or sometimes I cry. But it no longer debilitates me. It doesn't ruin a day or drive me to cancel my plans. I don't know if I'll ever completely escape the painful waves of grief, but I've gotten to a pretty good place in handling them and don't live in fear of the next one anymore.

Dan is still so much a part of me. So many things remind me of him. I miss him. I talk about him to new people I meet. I share our story. I found a way to live our "ALL will be well" mantra and how to find hope amidst loneliness and fear. I'm finding happiness after loss. It's been, and continues to be, hard work. It's been humbling. It's been impossible at times. In one of my last conversations with Dan I told him I wished he didn't have to die. At that time, he was a little disoriented and wasn't able to communicate much, but his response was still profound and has given me peace as I reflect on it.  "I wish you didn't have to deal with it. But you'll be okay." Although simple, his words let me know he was at peace with dying and that has strongly resonated with me. And, as usual, Dan was right. It's been quite a journey, but I'm okay. I'm finally okay. All is well.

Diary of a Coping Widow

About six months ago I was happily married. I had a husband whom I loved dearly along with elaborate plans for a perfectly perfect marriage. Today I am a widow. No more marriage and no more fantastically perfect plans. It's been, shall I say, a difficult transition moving from married to single, wife to widow (actually, "difficult transition" may be the understatement of the year).

Let's call the first month after Dan died "the fog." In those first several weeks, the world spun around me as I moved about it dazed and confused. I was inundated with immediate business like making funeral arrangements, notifying bank and insurance accounts, paying bills, transferring services to my name, modifying user settings on our computer accounts, and settling my work leave of absence.  My email, text message, and Facebook inboxes overflowed with notes of condolences, inspiration, and comfort.  My snail mailbox overflowed with Mass cards, sympathy cards, comforting cards, and gifts.  Essentially, I was in a constant state of "fog." (Please don't hold me accountable for anything I said or did in those weeks - I don't remember it). In the first chaotic month, I wondered how I was keeping it together, getting things done, making phone calls, taking care of business. I was numb to the words, "my husband died" as I repeated it over and over (and over, and over) to various representatives on the other end of a phone line in who-knows-where.

The next two months could be labeled "the distraction." Sure, I had my days, but the summer was full of reunions with friends and family, mini vacations, family vacations, and a flexible schedule that allowed for my fluctuating and unpredictable emotional needs. I stayed mostly in Pennsylvania at my parents house and made several trips to our apartment (always with a buddy) to get used to being there sans Dan. I laughed, I cried, I smiled. I had fun. I think I was still in shock, numb to everything around me.  I was in denial that Dan was really gone - like, seriously - not coming back forever. I pretended I was living someone else's life because I could. Distraction was a good thing.

September came and I went back to work. I'll label this phase, "the reality check." I was forced to transition from the initial grief period with an infinite level of acceptance for any type of behavior (think Lifetime movie marathons, yoga pants, and two hour naps in the afternoon) to reporting to a place every day, at a specific time, in dress pants. And make-up. And no naps. I was thrown into reality. I worked with my wonderfully naïve students and laughed with my compassionately supportive colleagues. Work turned out to be a good change. But after school, in my apartment, I had to establish a new routine for myself. I made time for exercise, writing, playing the piano. I learned to take care of myself and enjoy things I hadn't had time to in years. I wondered why I was SO tired when I got home. Grieving is exhausting.

October brought what I'll call, "the rollercoaster." My emotions cycled from high to low, controlled to helpless. Some of the time, I felt the energy to do normal things again. I spent time with friends, went out for drinks, and traveled. I ventured out into society as a single person. I survived the first of several milestones that hit back-to-back for us this time of year. In October, we passed what would have been Dan's second birthday with his new bone marrow. I celebrated my birthday and I'm getting ready for the triple Thanksgiving-Dan's birthday-Christmas punch in the next month. For the last six months, I've been living my life in milestones; my first "this" or "that" without Dan.  I've been living in the past in a way, too, always remembering "last year at this time." I don't know any other way to live right now. 

I'm so fortunate to have many people ask how I'm doing. Thank you for caring and thank you for asking. I'm okay. My tears vary from a well to a river each day, but I'm okay. My emotions vary from hope to fear, from smiles to sobs, but I'm okay. The last six months have challenged my strength and resilience beyond compare. I continue to have my days, hours, and moments where the pain is unbearable. I have daily pep talks with myself and frequently channel Dan's support to help me find the little joys, believe in all-will-be-well, and continue his crusade of love. I'm okay. I desperately miss Dan. I'm slowly clearing his things out of my apartment, re-decorating, and filling up my social calendar. I'm delicately moving forward towards hope for a joyful future. I'm practicing the love that Dan taught me every single moment of every single day we spent together. I'm doing my best to continue to see that people are good, this world is good, and this life has so much good to offer. My heart is broken and the Dan-sized hole still gapes. But I'm okay. I know that Dan is okay. And he wants me to be okay, too. 

Six months a widow; approaching the holiday season that brings joy and a new year that breeds hope. This Thanksgiving and Christmas I will ache for Dan, but I will pray for peace and search for comfort in the blessings around me. I will do my best to embody the spirit of love these seasons hold. I will cry, I will be lonely, and I will be sad. But I'll do my best to let love in. It's never failed me yet. ALL will be well.

Rest in Peace, My Sweet Husband

To know Dan was to love him.  To be in his presence was to be loved.  On May 17, my world stopped when Dan took his last breath that ended his 33 years of life, his five year battle with leukemia, and our four years of marriage.  My hopes (our hopes), my dreams (our dreams), my vows to him (our sacred marriage vows), were abruptly shattered in the quietest hours of the day. That morning, I became a widow at the age of 29.  I won't share the intimate details of our last days and hours with Dan, but I will share that they were precious, beautiful, and peaceful.

Believe me when I say I am happy Dan is no longer suffering.  Trust that I find comfort in knowing he is in Heaven.  The fear is gone.  The countless specialists, the sleepless nights, the endless trips to the pharmacy and texts to our doctor, the relentless procedures and treatments, the neverending side effects, reactions, infections - all came to a sudden halt on May 17th in the early hours of the morning.  But I miss Dan.  I miss our life, albeit "crazy", "difficult", full of medical expenses instead of social life expenses, full of cancer milestones instead of our children's milestones.  I miss quiet nights in our apartment watching Jeopardy! or reality television and eating snacks after a procedure or chemo.  I miss the clinic at Georgetown socializing with our doctor/nurse/tech/receptionist friends and the hem-onc unit that became a second home.  I miss catching up with the pharmacist and filling him in on Dan's latest ailment, chemo regimen, or "close call."  I miss watching Dan's physical therapy and the cute little smirk he shot me when I took his picture to post on social media.  I miss searching for recipes to alleviate a side effect, balance a vitamin deficiency, or beef up his weakening muscles, and then the look on his face when it turned out well (or gross).  I miss his hugs. I miss his laugh. I miss his beautiful smile. I miss his advice, his friendship, his company.  I miss our nightly ritual of holding each other and our "all will be well because we're in love" assurance. I miss Dan.

On May 17th in the darkest hours of the morning, I lost my husband.  For just over four years, I was Dan's proud wife.  From the first day, nothing about our marriage was ordinary.  Dan took chemo pills and we postponed a honeymoon until he was stronger, healthier.  We never had more than a four week stretch without a doctor's appointment and no more than ten doctorless days in a row in the last two years.  Dan got and was cured of cancer three times in the last two years. He defied statistics for all of our marriage. Cancer dictated what we could and couldn't do.  Cancer made us miss weddings, showers, bachelor/ette parties, get-togethers, vacations, baseball games, and birthday parties.  Cancer made Dan postpone his PhD program three times in four years. We talked about cancer a lot.  We promised it wouldn't affect our happiness, our love, or our faith.  We wouldn't let stress make us irritable.  We wouldn't allow fear to hold us prisoner.  We wouldn't let hospital stays, sickness, or the financial burden of treatment make us argue about petty things.  Dan and I were the happiest married couple I know. Cancer, and all it brought with it, was all we knew as a couple.  It didn't define us, but it certainly shaped our marriage, our commitment, our faith and our love. From the very first day, our marriage was extraordinary.

Dan is gone, I am a widow. On May 17th, everything changed.  The proverbial rug was pulled from beneath me and I'm left to sort out the mess. I'm left alone, scared, sad, overwhelmed, defeated, and even angry. I know I have the tools to find happiness again.  If you read this blog you know that Dan and I, as a couple, faced more adversity, trials and tribulations than many endure in a lifetime.  You also know that we were happy.  We found joy. We recognized the horrible things right in front of us, but we focused on and lived among the good things all around us. People always ask me how we did it, how we always "seemed so happy" despite all we had "going on".  We made a commitment to live life to the fullest. We learned, together, that there is good, there is joy, all around.  It wasn't frivolous, it wasn't for show, and it certainly wasn't pretend. It was genuine, real, true joy.  I plan to approach this grief process the same way I approached the cancer process.  I read and researched a lot, I learned a lot, I reached out a lot, and I loved a lot.  Sure, I can get caught up on how this is not fair, how much life we missed out on together, how sorry I am that Dan died, that he suffered, that I'm suffering, we're suffering (yes, I have found myself dwelling on that at times).  But I know that's not how Dan would do it. That's not how we would do it. We would let ourselves cry, hold each other close, say "I love you" and then look around.  We'd find something good. We'd have a snack, watch a show, cuddle, or take a drive.  I don't have to search far to find good in this world.  I am surrounded by so many loving friends and family.  People from all over the world have reached out to express their condolences and share their memories with Dan. I am humbled. I'm inspired. I miss Dan.

I'm so proud to have been Dan Lyons' wife.  Despite it ALL, they were the best four years, one month, and seven days of my life.  I will never forget what Dan taught me, what we learned together.  I will always remember his love, his smile, his laugh, his faith.  I will carry him with me until my last breath.  I will find happiness and I will continue to notice the little joys around me. I will remember that ALL will be well.

The first blossom on Dan's rose bush

Hospice

Two weeks ago we got news that abruptly ended the quest for answers to Dan's mystery symptoms.  We got a phone call that we'd dreaded for 18 months since the transplant.  We heard for the fourth time in five years that Dan's leukemia was back.  This time, however, there was no treatment, no transplant, no trial that Dan could tolerate.  We checked him out of rehab and brought him home to begin his hospice journey.     

On Monday, we had a safe trip to my parents' house in PA and enjoyed a rare and awesome grouping in the car - Dan, me, my brother, Colin, and Dan's college friend, Luke.  It was an emotional 2 hours of reminiscing, laughing, crying, listening to Bruce, stopping at McDonald's for 4 piece nuggets, 7eleven for Slurpies, and feeling the sun through the windows.  My family was busy converting the dining room into a bedroom for Dan and it looked beautiful by the time we arrived.  The hospital bed is so much more comfortable and easy to move Dan in so it was a welcomed change.  The windows bring in lots of light and the birds chirp outside the windows.  The room is filling up with flowers so their soft fragrance fills the air.  It is the perfect space. 

peace

We met with the new hospice team here and have been so impressed by their gentleness, kindness, and sensitivity in dealing with the most difficult questions/topics.  Dan and I signed up for massages and we are looking forward to a harpist coming to the house to play some music.  We've met with our nurse and social worker who have answered many of our questions.  A nurse's aid will come by a few times a week to help Dan bathe and help us care for him.  Hospice has been wonderful.

Two weeks ago, our doctor told us that this disease would likely grow quickly and progress in 2-4 weeks.  Dan is more tired than 2 weeks ago and definitely weaker, but he is still smiling, still socializing, still eating and drinking and lighting up the room.  We are so grateful for this time that he is awake, alert and asking for visitors.  He is scared, but is not letting fear consume him.  We are taking each day as it comes and making the most of the time we have left.  Fortunately, we have been talking about death and its possibility for years now so some of these conversations haven't been new to us.  We certainly are not "prepared" because I cannot even imagine life without Dan, but we are coping with the news in a way that allows us to face reality while living in the surreal state that is love, laughter, and joy surrounded by family and friends.  Nothing is normal anymore and we know that. 

The last two weeks have been a celebration of Dan's life.  We have received countless emails, texts, cards and letters reaching out to share memories, send love, and express gratitude for Dan's friendship.  I have no doubt that he is one of the most special people ever to walk this earth. We haven't had a chance to reach out to everyone individually, so I will say a collective "thank you" on here for all of your words.  "Thank you" for making us smile, for stirring up fond memories, for filling our house with food and flowers, and for showing us what it means to be loved.  We are forever grateful.  

I'm sitting next to Dan as he rests peacefully - the breeze through the windows, soft music filling the room.  I haven't opened the doors yet to the hustle and bustle of people and I'm sipping on some coffee in my pajamas.  In this moment, we are not afraid.  In this moment, ALL is well.  

A corner of Dan's room with a picture from a happy day

A Neurological Mystery

I'm back to my post at Dan's bedside as the neurological mystery that is Dan's brain unfolds.  It's been almost two weeks since Dan experienced a neurological incident that left him experiencing stroke-like symptoms alone and unable to move his left side, unable to reach his phone, and unable to call for help on the bathroom floor of our apartment.  Our friend waited downstairs for Dan to ride down in his electric wheelchair for an escort to a dentist appointment up the street.  Thankfully, he notified our building management and got paramedics on the scene after an unusual amount of time and several unsuccessful attempts to reach Dan on his cell.  They called me at work and I was able to make it home and ride in the ambulance with Dan where they rushed to diagnose the symptoms.  The following days consisted of a whirlwind of tests and consults with doctors who were perplexed by the complexity of Dan's case.  The stroke team quickly ruled out a stroke, despite his "stroke like "symptoms (slurred speech and significant left side weakness from head to toe).  MRI's revealed foggy white matter we already knew existed.  A spinal tap revealed no presence of leukemia.  The most possible rule-in was a virus.  A rare neurological virus that is very difficult to treat, very serious, and very life-threatening.

We sat down with a few different doctors who prepared us for the difficult nature of this case.  They informed us of statistics, of case studies, and had the talk we always dreaded.  Our family visited and we spent the weekend enjoying Dan, loving him, laughing with him, praying with him, praying for him, comforting him, comforting each other, and cherishing every minute.  Dan's strength improved a bit as the week progressed and we waited for the results of the spinal fluid analysis.  On Wednesday, doctors informed us that results were NEGATIVE for the virus.  As thrilled as we were to hear the news, we knew that this meant the doctors were back to the drawing board on a diagnosis.  Physicians from various specialties were in and out of the room with conflicting theories, orders for repeats tests, new tests, and repeat analysis of Dan's fluid.  That brings us to today.

Dan continues to present new neurological symptoms which spawns a new test and new specialty of physicians.  Dan's "corner suite" on the hem-onc unit has a revolving door of friends, family, doctors, nurses, techs, PT's, OT's, food service workers, volunteers, Eucharistic ministers, and medical students.  Georgetown is a teaching hospital so there are extra students coming to the door asking to evaluate Dan's weakness at the bedside.  In typical Dan fashion he responds, "they have to learn sometime" and allows them to poke and prod and "ooo and ahhh".  I am on spring break this week and hope to have information and/or a plan by the end of the week to get Dan settled into an acute rehab facility to get to work on improving his weakness.  In the meantime, the medical teams here are "monitoring" and testing new changes that occur.  We are overwhelmed, frustrated, scared, and tired to say the least.

We don't know what is going on with Dan.  We don't know why mysterious things are happening that keep his body from acting normally.  Dan is a case study.  His particular combination of symptoms, his complex medical history, his improvements, his setbacks, are all individual and unique to him.  We miss the days of "oh, X happened to you? We treat this with Y".  Dan has been in bed for almost two weeks now (minus a few hours in a chair each day and some PT/OT) so every day that goes by brings along new risks for infections and complications from being sedentary.  We are well supported and well taken care of here, but we are ready for a diagnosis, for treatment, and rehab.

On Thursday, we celebrated our fourth wedding anniversary.  Of course, we hadn't planned on spending it in the hospital, but we managed to enjoy the day nonetheless.  Our moms were prepared with cupcakes and balloons and family showered us with cards and well wishes.  The nurses established a do not disturb hour so we could eat dinner together in peace.  Dan's rehab team surprised us with surf and turf so we dined on filet and lobster tail with white linens covering the tray table.  Dan and I listened to Sam Cooke and reminisced about the one of a kind adventure we've been on the last four years.  We recalled the ups the downs, the trials, the tests, and all the joys, big and small.

We don't know if we'll get to celebrate our fifth anniversary together.  We don't know what is causing Dan's weakness, slurred speech, low vision, or hearing loss.  We don't know when Dan will get out of the hospital.  We don't know if he has a terminal virus, brain toxicity from chemo, or something completely different.  We don't know if his vision will ever improve or if he'll regain all of his strength.  Since we can't control what we don't know, we are spending our time focusing on the things we do.  I know that I love Dan beyond words.  I know that he loves me, respects me, and values me every single day.  I know that despite what we've "been through", we've shared the happiest four years of our lives together.  I know that had I had a crystal ball on April 10, 2010, I'd still have married him in a heartbeat.  I know that whatever lies ahead, I will continue to stand by Dan to face it together.  We'll face it with courage and we'll conquer it with love.  I know we will find joys in the little moments - in mint chocolate chip ice cream, in a hand squeeze, five uninterrupted minutes at the hospital, or a smile.

We'll look to God, our faith, our family and friends for strength.

We'll hold on to hope that ALL will be well.

fresh air on a spring day

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). 

   
 

Blind

Did I get your attention with that title? I promise to put a positive spin at the end of this blog, but for now, bear with me as a try and shed light into the vision loss that has taken over the focus of Dan's recovery.  I mentioned earlier that the white matter in Dan's brain has been damaged from preventative chemo injected into his spinal cord.  We know there is a left peripheral field of vision cut in BOTH eyes; that is, the left peripheral vision of his left AND right eyes.  This makes it very difficult to see things as a whole.  For example, when looking straight on to someone's face, Dan sees only half.  If he turns to the right he can make out both sides. This vision cut impacts his balance, his perception, and, as is becoming more and more evident in class, his reading/writing and ability to track words on a page.  Now, if this doesn't seem terrible enough, his ability to see in general has gotten worse in the last few weeks.  He can no longer make out the questions on a QuizUp game, the scores of a sporting event, the headlines on a news program,   the conniving expressions on Frank Underwood's (House of Cards) face, or the Japanese 1620 trick that Sage Kotsenburg perfected in the Sochi Olympics this week.  Forget about reading texts, browsing the Internet, checking emails, and reading magazines.  He just can't see.

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