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

     

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

Christmas Spirit

Dan and I spent four days in PA for what was a refreshing, fun, and joyful escape from the busy schedule at home.  We ate well, laughed a lot, and spent time with family and friends we hadn't seen in too long.  We even made it to see Catching Fire on black Friday, a Gabler family tradition.  Dan got around okay and climbed a flight of stairs each night to go to bed.  Lots of progress all around, both mentally and physically.  We are in the Christmas spirit now and are looking forward to my two week break at the end of the month.

the annual champagne cork-off

sweet Ellen Hanna and her pearls

dinner time :)

Since Thanksgiving, Dan's seen a few specialists to evaluate some residual effects from PCP.  An ophthalmologist tested Dan's vision and determined that he has very little peripheral vision on the left side of both of his eyes, indicating a problem with a nerve on the right side of his brain.  We are waiting to see a neurological ophthalmologist in a few weeks to do some more tests to determine what happened to the nerve to block Dan's vision.  It is scary and uncomfortable for Dan, but he's learning to compensate.  The pulmonary specialist decided that the excess fluid in the lining of Dan's lungs (shown in the CT from a few weeks ago) needed to come out through a procedure called thorocentesis. They'll drain the fluid and send it for evaluation and tests to figure out why it's still there.  He's hanging on to some fluid in his feet and ankles so we're looking forward to those answers soon, too.  All of these appointments happen during the day while I'm at work so we've continued to rely on the moms to help out.  Dan's getting to know our friendly neighbors who take him to PT, and I'm home in time to take him to acupuncture.  We're still looking forward to a time when we don't need to consult with specialists and when Dan can be regular, but for now, we are grateful for their expertise.   

Chemo starts this Wednesday and lasts eight weeks until the "IV phase" is done.  Our oncologist will watch Dan's blood counts with great caution since he is already weakened.  It will be a delicate balance between getting the medication Dan needs while making sure his immune system doesn't become too compromised.  We hope and pray he tolerates each dose successfully so he can complete this phase as planned.  

Dan and I have been recalling last year at this time and how it felt to be so far away in Seattle during the holidays.  It was an exciting time when we cherished life and the gift that Dan had received.  Our Christmas season was consumed with appointments, medications, graft-versus-host disease, monitoring, checking and watching Dan's new body closely.  It was a scary, yet joyful time.  We are drawing on that spirit this year as we face many, many new challenges.  It is easy for us to feel defeated and it is getting more difficult to get back up after each fall.  This time of year gives us an opportunity to celebrate the blessings we've been given and share them with those less fortunate.  I wish Dan and I could take a walk in the mall to see the crying kids on Santa's lap, stroll down King Street with a holiday beverage from Starbucks,  cut down a little Christmas tree to fit in our little apartment, and brave the holiday traffic to shop for the perfect gifts, but we can't.  I must admit, we have our moments when we scream that it is just not fair. But then, we turn on some Christmas Pandora music, whip up some lattes in our Vitamix, log in to amazon.com and tune in to our Christmas spirit.  I am so grateful to have another Christmas to celebrate with Dan and I plan to cherish it.  We're not wasting any time with not fair.  I love my husband and he loves me.  Our family lifts us up every day.  Our friends stand by our side.  ALL is well in blessings and love.

That is our Christmas Spirit.    

What a Difference a Week Makes

I'm compelled to write an update today as our weekend comes to a close and we wrap up a solid week of progress! After four weeks of too many issues to count, of countless pain sources, nausea, weight loss, depression, and appointments with various specialists, I can confidently say that we've got things under control.  The headache is gone and the nausea has subsided. We got Dan back! We're back to our laughing, our talking, our eating junk food together, our watching reality tv together, our loving life, and our positivity.

We're not sure what prompted the turn around - acupuncture, the perfect nausea medication, pain medication, rehab, simply time, or a combination thereof, but things have certainly turned around.  I/we (we being either one of the moms visiting that day) could literally see the change on Dan's face.  Dan slowly started eating, sitting up longer, staying awake longer, and being a more active member in our conversations. I went to work feeling less guilty and less anxious about being away.  We've gone from oh my gosh, things are completely out of control, I'm drowning to alright, there are a lot of things going on right now, but I'm staying above water. Each morning, I prepare a cooler of food and drink items for Dan to consume throughout the day.  The microwave is in the living room along with any dishes/utensils he may need.  He has some rehab tools (a pedal floor machine, resistance bands, therapy resistance putty, incentive spirometers) all within reach to complete on a schedule.  Of course, his "medicine bucket" and medicine log sheet are never far either.  He's still using a walker but practices walking with me, holding my hand for support (we're still hoping to progress to a cane soon).  Twice a week a neighbor pushes him in his wheelchair down the street to physical therapy.  There, he stretches and works on strengthening his weakened muscles along with some e-stim nerve therapy for his damaged hand. He also has been enjoying some acupunture twice a week, also right down the street.  His week wouldn't be complete without a trip to the Lombardi Center at Georgetown where he consults with our primary oncologist about the latest issues, has blood drawn, and discusses progress with the current chemo regimen.

This past week, one of the additional appointments was a CT to assess Dan's lungs post pneumonia and look out for any residual infection and/or fluid.  The lungs looked great and were completely free of infection.  There was, however, some fluid left in the linings of his lungs - we're waiting on how to handle that (may be a simple procedure, could also be to do nothing at all).  To add to our excitement, Dan also wrapped up the first part of the first 15-week cycle of this chemo regimen.  That means one less pill a day and no more fist-full of additional chemo pills each Thursday.  He'll move from "pill chemo" to "IV chemo" for the next  8 weeks.  We aren't sure of the specifics yet but will get the details tomorrow at our consult.  Luckily, Dan has a week completely off of chemo as we go home to celebrate Thanksgiving.  So nice how that worked out.

Hopefully you can sense from this post that we're doing better.  We're laughing again, we're smiling and we're getting into the holiday spirit.  We continue to marvel at how joyous the small things can be when you've been deprived of them.  I was moved to tears the first time Dan ate what I was eating for dinner.  I couldn't stop smothering his face with kisses when he stayed awake through an entire episode of Gray's Anatomy.  It's the simple things that make us happy and it's the simple things that we're thankful for this year.  I know I'll be packing Dan's walker, wheelchair, handicap toilet, shower chair, and medicine bucket to take to PA - but we couldn't be more excited to see our family and share a meal this Thanksgiving. We don't know what the "IV phase" of chemo will bring, but we're not worrying about that now.  Our heads are above water.  We're treading in the deep end surrounded by our family, our friends, and our team of loved ones who support us every day.

ALL is well and we are grateful.

Happy Thanksgiving to you and yours - we wish you safe travels, good food, good company and success for your football teams (that one was from Dan).

Making his way to normalcy, little by little

    

 

A 365 day milestone

Dan's new birthday has come and gone and we are charting new territory after day 365.  Making it to a year seemed unachievable at one time.  It was mathematically, statistically unlikely that Dan would see one year post transplant disease free.  Again, Dan beat the odds, made a mockery of statistics, and saw 365 days without a cell of leukemia around. Our family and friends showered Dan with almost 150 birthday cards and gifts galore.  It was an overwhelming day full of emotions, tears, memories and love.  We are grateful, as always for the outpouring from our team - THANK YOU!


140 card pick-up

Seattle memories in a basket

Sadly, the birthday celebrations were hampered by a debilitating spinal headache that put Dan out of commision for almost two weeks, causing him to cancel rehab, forcing him to lie flat for headache relief, and preventing him from making the progress we so desperately want.  I must admit we are off our game on the positivity field and have felt pretty defeated as we've been defensless against this headache. 

Dan has had countless spinal taps, a procedure involving the spinal cord along with some preventative chemo to keep leukemia from developing in the spinal fluid (a sanctuary site for disease).  It's always painful, always puts you out a day or two with some soreness and maybe a little nausea.  There's always the risk for a spinal headache, but luckily we've only known it as a "risk" - until now.  Basically, it's an imbalance of spinal fluid that keeps the brain from being adequately suspended in fluid in the skull.  This imbalance causes the brain to rest against the skull at times, hence an excruciating headache.  The only relief comes from lying flat.  So lie flat Dan did - for 10 days straight.  I tried to be creative in how to feed him, get fluids in him and keep his muscles from deteriorating further.  He ate pureed foods, drank through a straw (while laying down) and did some exercises in bed, but mostly felt comfortable only when he was asleep.  So sleep he did - for nearly 10 days straight.  It was awfully quiet in our apartment.  Dan slept and I scoured the Internet for recipes, tips and tricks hoping to give him relief.  Time has finally passed and we have turned a corner in the last few days. 

On Monday, Dan started acupuncture and his headache has been manageable ever since.  We are optimistic that this new treatment will help many of Dan's ailments and get him back on the offense with an edge on his symptoms. He'll continue these treatments a few times a week to manage his nausea, aches/pains, nerve damage and headache.  He's back on the rehab calendar and had two sessions this week.  He's having a CT to check the status of his lungs post pneumonia and an eye doctor appointment to evaluate some vision changes he's been having the last few weeks.  We've continued to rely on the help of our parents and friends to help get Dan to his many appointments during the day while I'm at work.  They have been a blessing in so many ways - cooking, cleaning, care giving, transporting, errand-running, and rescuing.  We are loved.

The last time I wrote we were ready to get back to normal.  We're even more ready after another three weeks of obstacles.  Slow and steady wins the race, they say.  Dan is working hard every minute to stay awake, eat, settle his stomach, and strengthen his lungs/muscles and I'm working hard to juggle the many obligations of work and care giving.  We still haven't had much (any) time to dedicate to friends or social outings, so we continue to look forward to our trip to PA for Thanksgiving full of family, fun and much needed laughter.  The past few days have been better so we are growing more optimistic about that corner. We're finding joy in peaceful moments, the blessing of our parents, the support of our friends.  We're sharing the joy in our friends' lives, in engagements, in new births.  We're experiencing joy in cancer free and we're never taking that for granted. 

ALL is well in cancer free. 

a kiss and a cupcake for my birthday



Rehab with a Dose of Chemo

Two weeks ago I shared the latest on Dan's recovery post PCP.  Unfortunately, there isn't much new on that front other than an increase in the neuropathy nerve pain and an appointment with a neurologist.  The swelling in his feet/ankles/calves has not resolved so he's now wearing compression stockings each day.  The nerve pain has continued to get worse and is completely unbearable at times.  The poor guy can't catch a break.  He is motivated to keep walking to improve his strength and stamina, but it's difficult to get moving when he's in so much pain.  He's started a new medication that hopefully kicks in this week and settles the nerves down.  Dan still gets around with the walker but is practicing more and more with his cane.  His balance is off so I've become a pretty good spotter.  I'm not sure what I think I'll do if he needs me to catch him - hopefully we don't find out!

The best news is that he "graduated" from speech therapy and is eating practically normal foods.  We've been able to focus a lot more on his nutrition because his appetite is back.  We are loving that normalcy.  The OT and PT continue to come to our house through this week and then Dan will transfer to outpatient rehab in Old Town, just a block away.  There he'll also get some nerve stimulation therapy on a nerve in his right hand that got "kinked" in the ICU, which causes limited range of motion and poor dexterity.  He's wearing a brace that stabilizes his wrist to help him eat, get dressed, type and text, but we are optimistic that he'll regain use of his hand more quickly with this new therapy.

Now that he's stronger, eating, and his infection is clear, our doctor started Dan back up with the 18 month chemo regimen  we signed up for in August.  Dan completed about one month so we're back on track with 17 more to go.  The first six weeks are full of chemo pills with a few spinal taps/IV chemo.  He won't have IV infusions so he's looking forward to his hair growing back and energy improving during this "reprieve".  These chemo pills are still poison and alter the blood cells to keep leukemia from developing; however, they're more mild with fewer side effects, so we are hoping his liver and other organs stay happy so we can follow the protocol as planned.  One week down, so far, so good.

It's been almost two months since Dan got a fever that sent us to the emergency room.  In some ways it feels like forever ago as the traumatic details become fuzzy.  Yes, that was the scariest week of our lives; however, these subsequent weeks at home have been the hardest.  Dan is completely dependent on others right now and progress is slow.  I'm juggling work and caregiving.  We've been lucky to have many visitors who keep us feeling "in the loop" with some semblance of a social life.  It's been difficult to leave the house except for a few short drives just to get out.  We haven't been out for a walk, out to eat, or out with friends to watch a football game at a bar.  We haven't been to a pumpkin patch or wine tasting this fall.  We're ready to get back to normal. 

Last October Dan was having treatments in Seattle to prepare for his bone marrow transplant.  The picture we envisioned of our lives one year later is so much different than our reality today.  We're grateful that he's here, he's alive and cancer free.  But we are so tired of complications, set backs, hurdles, bumps, detours or whatever analogy we happen to choose to compare the many challenges we've faced.  We love each other, we love our family, and we love our friends.  We love snacking on treats and watching reality TV.  We're doing alright.  We're counting our blessings and we're gearing up for the next 17 months.  Dan's here and we're going to celebrate his birthday next week because he deserves it.  He is a fighter.  He doesn't give up.  We're determined that ALL will be well.          

All smiles on our comfy couch

The Aftermath

We're working through the aftermath of PCP and learning that progress is slow.  Slower than you expect it to be.  Slower than you want it to be.  But as slow as it has to be.  When Dan got home, he could stand at his walker for about 1-2 minutes before he'd need to sit down.  He could walk about 10 steps until his knees signaled they'd had enough.  He couldn't stand up or sit down without support.  He only had the strength to lift his arms a few inches.  His swallowing muscles were so weak that only very specific consistencies/textures could safely move to his stomach and away from his lungs.  His oxygen saturation was on the low end of normal and he had a slew of new medicines to take every day.  Dan's work was cut out for him.   

The PT, OT and speech pathologist have been coming to our apartment 2-3 times per week to work with Dan on his strength, daily living tasks, and eating.  He walks the hallways in our building, practices getting in and out of the bathroom, getting dressed, and lifting small weights.  He's eating mostly regular foods now and his swallow mechanism is nearly normal.  It is such hard work, but Dan is motivated, positive, and determined to get better.  He's working towards ditching the walker to use a cane in the near future.  His oxygen saturation has been better with regular respiratory therapy at home.  The therapist in me is making sure there are spreadsheets to track progress and log activity and eating while I'm at work.  He's also back to wearing his pedometer to track the improvement in his step counts each day.   While I'm at work, "the moms" have been taking turns visiting us to keep Dan company.  It's been a challenge and all-consuming, but so worth it to see Dan make gains each day. 

Unfortunately, there is a bigger issue keeping Dan from making significant progress - intensive care neuropathy.  It happens sometimes after people are put on paralytic (coma) medications in the ICU.  The nerves in the limbs are "turned off" during the coma and then misfire for awhile after they're "turned back on".  It's a tingling and intense "pins and needles" feeling so strong that he can't feel or move his toes much.  Dan describes an extremely painful stabbing sensation on the bottoms of his feet coupled with the constant pins and needles jab all over.  His feet are also very swollen, likely due, in part, to some malnutrition and protein deficiencies he's still working to replenish.  Our doctors are concerned and cautiously monitoring this, but, unfortunately, there is not a quick fix, just physical therapy, increased protein in the diet, feet elevation and our favorite - time.  We've been religiously following doctors orders with little to no improvement so far.  Most of the time this neuropathy resolves.  Sometimes it doesn't.  We are praying that it goes away soon.    

All in all, progress is good.  They're using that word expected again, which is what we like to hear.  Of course, we are overwhelmed, discouraged at times, bummed that we are here again, but are happy that Dan is here at all so we aren't complaining much.  Dan is healthy enough to start back up with the 18 month chemo regimen next week.  We're in the routine now and ALL is well.

Tomorrow my family will gather in northwestern PA to celebrate the life and memory of my Aunt Becky who tragically passed away earlier this week.  She, along with my uncle and two cousins, were hit by a car on a rainy Saturday afternoon two weeks ago.  My mom's sister, my aunt, was full of life. A mother, grandmother and friend.  I loved her very much and will always miss her.  My heart breaks for her two daughters and her son and for her two precious grand babies.  I am once again humbled at the fragility of life.  Dan fights so hard for his while others are never given that chance.  It's times like these we're reminded to celebrate little joys and live for today.  Sure, we can look forward to the future, but the future is no guarantee.  I know Aunt Becky celebrated joy.  She was proud of her family and loved her children.  She went to heaven surrounded by our prayers and our love.  And now whenever I see the sun's rays shining through the clouds, I'll know she is surrounding me, too.

Prayers, Courage, Perseverance and the other PCP

Our last post was titled "A Fork in the Road" and chronicled the latest detour on our road trip to cancer-free.  Since then, we've managed to get terribly lost - completely off the beaten path with sketchy GPS reception. But now we are finally finding our way back to the asphalt.  Most of you are aware that Dan came down with a terrible pneumonia at the end of August that landed him 13 days in the ICU, 9 days intubated on ventilator support, and 2 days in a medically-induced coma.

Dan went to his first day at GW since March 2012 on Monday, August 26 feeling nervous, excited and motivated, but a little short of breath and feverish.  After contemplating sucking it up versus listening to his body, we headed to the emergency department at Georgetown for what became the scariest and most difficult experience of our lives.  Through tests and x-rays, procedures and evaluations, it was determined that Dan had PCP, a type of pneumonia developed only in people with compromised immune systems, namely the HIV and transplant populations.  Apparently we all have a little PCP in our lungs, but our immune systems take care of it and keep it at bay.  Since the transplant Dan's been on a medication to prevent him from getting it, but, as we are learning all too well, nothing is ever guaranteed.

On Wednesday, surrounded by my parents, Dan's mom and my sister, I listened to the doctor tell me how significantly Dan's health was "deteriorating" and that "the next 24 hours will be crucial".  He advised us to call our families so we could be together through that time.  By 2 am, Dan had his mom, brother, siblings-in-law, and parents-in-law at his side.  They gave him some paralyzing medications to put him in a comatose state so that every molecule of oxygen could be used to oxygenate his organs and keep his body going.  He stabilized overnight once the medicine kicked in. I can't describe how it felt to see my husband that way, other than I almost felt paralyzed myself.  We cried, we prayed, we held Dan's hand, we talked to him, we tried to make him comfortable, and we waited.  After 48 hours they took away the paralytic and Dan slowly started to wake up.

It took about 3 days for Dan to become aware, orientated and able to communicate with us.  Those 3 days were trying as Dan asked the same questions over and over, confused the days and time, experieneced a wide range of emotions, including panic, fear and sadness, and basically moved through various states of consciousness as the sedatives slowly wore off. He finally started pointing to letters on an alphabet board and using a picture system to communicate.  Dan's nurses and medical team started to see Dan's charming personality as he began to smile, give thumbs up and sign "thank you" throughout the day.  He got used to the tubes down his throat and starting coping with his health situation.  Before Dan went to "sleep" he thought he was going to be temporarily intubated on ventilator support while they did a lung biopsy to diagnose the pneumonia.  We had no idea that what happened even could happen let alone would happen.  It was quite a lot to handle.

Around Tuesday, after a week in the ICU, Dan was stable enough to begin receiving rehab services from physical, occupational and respiratory therapies.  He did exercises in bed and learned stretches to improve his mobility.  He worked hard each day and impressed the therapists with his stamina and drive.  The doctors continued to work on keeping fluid out of his lungs, managing his organ function and vitals and the rehab team pushed Dan to keep moving to avoid further muscle deterioration.  I went back to work and "the moms" stayed with Dan each day for moral support and strength (and of course good company).  We had an amazing team of medical people, our familiar team and many new faces, and family/friends to keep our adrenaline flowing while the days progressed.  By Friday, the tubes came out of his mouth and Dan learned to breathe on his own again with masks and a nasal cannula.  The speech therapist evaluated his swallow and recommended exercises to strengthen his neck muscles to safely move food/liquid to his stomach and away from his lungs.  She recommended thickened liquids and many exercises to improve his swallow mechanism.  On Tuesday, a nasal feeding tube allowed Dan to receive his nutrition through tube feedings so he could focus on strengthening his swallow and relieve the pressure to maintain his nutrition orally.  The days have continued to go on with rehab in full swing and the term "infection" being used less and less.

Now Dan can stand in place with a walker, move to his bedside chair/commode, step onto a scale and sit up independently.  He is making progress with his swallow and will hopefully have the tube removed this week and be able to eat enough on his own to keep up with his nutritional needs.  We plan to be discharged home with PT and speech coming to our apartment several times throughout the week. Dan's chemo has been postponed until he's healthy enough to tolerate the next doses, hopefully in a few more weeks.  Unfortunately, he had to take another medical leave of absence from GW to focus on his health.  He is more than disappointed but knows it's the only option right now.  His colleagues and professors have been sensitive, accomodating, and supportive throughout this entire ordeal.  For now, school is again on the back burner while Dan continues on this treacherous road to recovery. 

It's been three weeks.  The world is going on around us while our world has practically stopped.  I am back to work to regain some "normalcy"; although, nothing is normal at all.  I think back to the blur of tears, hugs, naps, occasional showers, occasional bites to eat and countless hours at Dan's side during the "critical" time.  My family took care of me and each other as we watched and waited for Dan to improve.  I prayed that Dan was peaceful, unaware of the looming danger.  I prayed that he would feel my love and the strength of our families through his sleeping veins. I prayed the medicines would work. I begged for the chance to feel Dan's hand squeeze mine back.  We have been blessed again and Dan is here.  He is making strides each day with abounding courage and perseverence.  We may not be "normal", but this is our life, this is what happened, and this is where we are.  I may not have found joy in every single day, but I can find it now.  Dan squeezed my hand.

We don't dwell on how hard our life is or how much we wish it were different.  We aren't always strong and we don't always smile.  We let ourselves cry and we get mad.  But then we get a tissue, we wipe our tears, we hug it out and smile.  We smile at each other and we acknowledge our blessings.  The blessing that we're here.  That the medicine is working.  And that we found our way back to the asphalt.

                                                    some PT with Patty

 

                            a little speech/swallowing therapy

        

                                   finally getting comfortable on 2Bles

   

                                                             

                                 fresh air kisses