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

     

Respecting Life

I'm back to the blog after asking Colin to write an entry.  We were delighted when he accepted and honored when he shared his beautiful thoughts with our readers.  Now I'm home on my second snow day (this week) without my work computer so I thought I'd take the time to update our friends on Dan's progress and the happenings with the VA Lyons.

Since Colin last wrote, Dan started back at George Washington to finish what he started in 2012 and enrolled in a class towards his PhD.  He's continued with a few more weeks of chemo (only 3 left this cycle!), a couple more sessions with the physical therapist, several more consults with a variety of specialists, many more tests/follow-ups/scans and x-rays, and a daily pill regimen to keep up with the best of 'em.  All in all, things continue to progress as Dan puts one foot in front of the other. He still practices walking with a cane when someone else is around to support him, but he's most comfortable and safest with the walker at this point.  He's tolerating chemo treatments well and we've been managing the side effects so he doesn't lose the weight or sleep that he so desperately needs.  The biggest issues now are his lungs and vision.  After many appointments and sleepless nights of worry, we finally have some answers.

In my last post Dan was getting ready to have fluid drained from the lining of his lungs.  We were surprised to learn there was a liter and a half of fluid hanging around! After the procedure Dan immediately felt relief, breathing easier and walking further without feeling winded.  It was a welcomed sense of progress as we closed the door on the lung portion of Dan's recovery from pneumonia.  Unfortunately, in line with our the-door-is-never-closed-in-the-medical-world trend, the lung portion isn't over.  He had a follow-up x-ray and consult with the pulmonologist last week that showed some new fluid developing in his left lung's lining.  Dan doesn't seem to notice it at this time so it's not necessary to drain yet.  We aren't too keen on extra appointments and procedures these days so we'll wait until it's necessary to have the fluid removed. We have another follow-up in six weeks where hopefully the fluid is gone and we can say goodbye to the pulmonologist for at least a few months (keeping the door ajar seems like a more reasonable goal).  In the meantime, we have an appointment with the cardiologist for some tests to make sure the fluid isn't related to his heart.  We don't think it is, but in the medical world it's all about ruling out so we have to cover our bases. 

We've been to at least three different vision specialists and neurologists to find answers about Dan's left peripheral vision loss.  A neurologist ordered an MRI and discovered a "fog" surrounding Dan's brain.  It seems that the "white matter" has been damaged from the chemo administered through Dan's spinal taps over the years.  White matter is bundles of nerve cells that help the brain transmit information throughout the brain. There is nothing wrong with Dan's brain, and nothing wrong with his vision per say, but the information telling his eyes to see isn't being communicated correctly.  We're waiting on information about how to proceed with the rest of Dan's treatment because there are several spinal taps with chemo to his brain involved with the regimen.  We may forgo the spinal taps to avoid more damage, but it's possible we'll need to risk the damage to make sure Dan gets the chemo.  Stay tuned for the decision. In the meantime, we plan to set up occupational therapy to help Dan learn to compensate and/or regain some of his peripheral vision in hopes of learning to drive (eventually) and improve his vision overall.  It is quite a nuisance as Dan struggles with and learns to live with vision loss daily.  As with all challenges thrown his way, he's making the most of "the new normal" and focusing on the positive.

Speaking of positive, we welcomed another niece into our lives, Gwyneth Rose!  My sister and brother-in-law had their third child and gave us our 5th niece/nephew to adore.  Our little angels remind us how precious life is, how beautiful life is, and how blessed we are to live it.  Little people like Gwyneth always serve as a tangible reminder that every life is important and every tiny life has purpose.  On this day when many of our friends are marching for life in the nation's capital, we say extra prayers for the millions of tiny lost souls who never have the chance to show this world how special they are.  We respect life.  We cherish life.  And we fight for life.  In these long and trying five months since Dan fell asleep into a coma, we've learned more than ever that life is a gift.  We are practicing patience and perseverance.  We are praying for strength.  We have good days, but they're never easy.  And still, we maintain our belief that life is good.  Life is joyful.  Life is beautiful.  Dan is making progress, albeit slow, but he's getting better.  He's back to school, he's tolerating chemo, he's going to physical therapy.  We're celebrating little joys and documenting our little victories whenever they come. 

Today's a good day. We're warm, we're safe, we're together.  We're here.

ALL is well.

Uncle Danny meets Gwyneth

braving the cold for PT

 

Put One Foot in Front of the Other

When Hanna asked me to do a ‘guest spot’ on the ALL Will Be Well blog, I was intimidated. Not only is their story beautiful and moving, so is the way they capture and relate it to the world. Further, people might be expecting a big name celebrity, like Patty or Wanda or Justin Timberlake, and be disappointed that it is merely Dan’s-friend-slash-Hanna’s-brother. However, given the large number of people who also fall into the category of “Dan’s friend,” I hope I offer a relatable viewpoint.

I borrowed this song from Santa Claus is Comin’ to Town for the title not just because it is an underrated Christmas masterpiece, but because it is literally what Dan has been doing. Step by step, shuffle by shuffle, he is moving around with his walker (which sports two miniature Notre Dame boxing gloves) with dexterity. Stairs are a big deal, standing up or sitting down requires a lot of effort, and simply traveling from one room to another is an event.

Figuratively, each small step also helps Dan and Hanna experience normal life, or at least the ‘new normal’ to which Hanna has referred in previous posts. For instance, the three of us and my wife, Kathleen, attended Hanna and Kathleen’s 10-year high school reunion two weeks ago. To give some perspective, what was a fun but not atypical night for me was Dan’s first beer and first time wearing jeans since before Labor Day. Dan and Hanna also got to enjoy family time with Joe, Sarah, Max, and Emma at Patty’s house. (Note: if you plan to stop by a Lyons family gathering to say hello, be prepared to have at least 2 helpings of a ‘light lunch’). They even participated in the Machalette Family Christmas Gift Exchange in Philadelphia and the Gabler family Christmas Eve Extravaganza, each of which is like cramming a three-day weekend into one afternoon. These are huge accomplishments considering that last year the couple was in Seattle learning the ins and outs of GVHD.

My best snapshot, though, into a day in the life of Hanna and Dan was on December 26^th. I was planning to take Dan to Georgetown for a chemo treatment, but he developed a ‘minor’ cold the day before. There is no ‘minor’ cold when you are on chemotherapy because your immune system is weak, and their doctor advised that he skip the treatment and focus on fending off the virus. On doctor’s orders, we hung tight; however, that afternoon he developed a ‘slight’ fever of 100.3^o. Likewise, there is no ‘slight’ fever, and their doctor suggested that if his temperature reached 100.5^o, he should go to the ER. So that night we played the waiting game. Dan rested while we made dinner, watched a movie, and periodically went upstairs to hang out with him. Hanna monitored his temperature, knowing that two hundredths of one degree was all that separated a quiet, uneventful evening from an exhausting and tumultuous night in the emergency room. His fever broke overnight and ALL was well, but it underscored the “new normal” they experience on a regular basis.

Yet, this was just one day and it was still one step forward; one foot in front of the other. In this sense, I think Dan and Hanna approach each day as the next mile on the freeway. They use the rear view mirror to see only what hardships they’ve overcome, and they shine the high beams only when the road ahead is particularly dark. If it rains briefly, they wipe it away, and if the windows fog up…hey, that’s my little sister, Dan! At times, I imagine they feel as if they merged onto the freeway too long ago to remember and that the exit is still too far ahead. But rather than dwell on uncertainty, they focus on the next mile marker.

Hanna recently mentioned that she and Dan have become very adept at finding the silver lining, and at the risk of wearing out my welcome (Timberlake has already been contacted for the next guest spot), I’d like to close by giving my interpretation of this phrase. First, Jennifer Lawrence and Bradley Cooper ain’t got a thing on Hanna and Dan. Second, silver linings connote a sense of “we’ll make the most of a bad situation,” and when I spend time with them, that is not what I observe. I see them completely compartmentalize the ebbs and flows of their crisis, giving full attention to both. Granted, most of us do not see them embrace the ebbs, but they do. A lot of us do witness the flows, and in those moments, they aren’t making the most of a bad situation, they’re simply living, laughing, and loving. When Dan and I discuss sports, laugh at oddly inappropriate innuendo on Family Feud, or get nostalgic about the days before cell phones, it is Dan being Dan. When Hanna and I play with our niece and nephew, trade new music suggestions, or develop a solution to the American education system, it is Hanna being Hanna. And when the two of them are together – be it marking his daily pill spreadsheet or blurting out answers to Jeopardy! – it is Dan and Hanna being Dan and Hanna. I’m sure that they never put their situation entirely out of mind, but their happiness is not tarnished by tomorrow’s consultation or next week’s biopsy.

And I think that is what makes them so amazing. Their happiness is real, palpable. It has a direct positive effect on anyone who experiences it. Almost every person I encounter (e.g., high school classmate, work colleague, frat brother of the guy whose cousin’s dentist tailgated next to us one time) asks about Dan and Hanna. The number of individuals who read this blog may be in the thousands, and while Mark Zuckerberg deserves some credit, I believe it is simply because Hanna and Dan inspire people, no matter what your degree of separation. Their blog is for us. Through their story, we get to witness love, faith, hope, courage, and compassion. As they gracefully and gingerly put one foot in front of the other, let’s hope it has a ripple effect on each of our lives in the New Year. And most importantly, ALL will be well in 2014.

friends-slash-family