Monday, April 14, 2014

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






Sunday, March 16, 2014

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). 

   
 

Sunday, February 16, 2014

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
     

Wednesday, January 22, 2014

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
 


Tuesday, January 7, 2014

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 26th. 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 100.3o. Likewise, there is no ‘slight’ fever, and their doctor suggested that if his temperature reached 100.5o, 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

Saturday, December 7, 2013

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.    


Sunday, November 24, 2013

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