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.