Day 130 - Back to Life

I guess it's about time I update you on Dan's progress and our transition back to Virginia.  It's been exactly a month and we're finally settled in, back to life (and reality), feeling the closest we've felt to normal in about a year. 

Our trek home began with a trans-continental flight with two (overweight) checked bags, two (maximum size regulation) carry-ons, two (as large as possible) personal bags, and one back pack jammed full of IV magnesium and about 15 different medications in tow.  Needless to say, our nerves were shot after a stressful TSA encounter with extra scans, questions, and nasty looks by frantic travelers held up in our line.  Once security verified we were just an anxious couple with absolutely no intentions of smuggling a bomb onto the plane, we made our way to the gate where Dan was due for some meds.  To add to the ordeal, Dan threw out his back lifting our (overweight) bag onto the scale and was in excruciating pain, unable to lift a finger. He swallowed his pills while I checked our carry-ons and tried to manage our way too much luggage.  After a brief meltdown, we were on the plane and headed home.  SIGH. The day was stressful, but our anxieties were tempered at the sight of our family smiling at the gate in Harrisburg.  More importantly, there were more than enough hands to remove every single bag from our possession and I didn't lift another finger either.  It was good to be home.

Dan and I spent the weekend in PA, reveling in the fact that we made it, safe and sound, and a new adventure was upon us.  We met with our Georgetown team on Monday and had the reunion we'd been waiting for since our goodbye in September.  There were hugs and tears and medical talk to make the transition a seamless one.  After our appointment, we made our way across the Key Bridge to Virginia soil and our perfect Alexandria apartment.  To our surprise, our friends decorated with balloons, streamers, flowers, and stocked it with groceries to hold us over a day or two until we got to the store.  Our friends proved amazing once again and set the tone for a restful night/day back home.  The previous 48 hours had been extremely exhausting and emotional as we moved out of our Seattle apartment, flew across the country, reunited with family, friends, and doctors, and set foot back into a home that, at one time, we questioned whether or not we'd set foot in together ever again.  Needless to say, we held each other tight that night and counted our blessings.

Since then, I'm a lot calmer, Dan's getting stronger, and we feel kind of like a normal couple - but not quite.  I had a week off then headed back to work in Fairfax County as a speech pathologist in a middle school.  My old position was filled so I'm covering for a maternity leave through the rest of the school year.  Those who know my love for the little guys know that this has been a big transition for me, but I'm finding that middle schoolers have their own uniqueness and I'm even enjoying them a little bit! The girls like my clothes and the boys are impressed with my sports knowledge (as long as it's Philly related!).  I'm getting used to working full-time after 7 months off, but, it's one more sign that we're "normal" so we'll take it.  Dan's getting used to his new life, too.  I've added a "to-do" list to his daily medicine log and he's doing a great job checking them off.  He is slowly taking reigns of errands throughout the week, goes to daily mass, the movies, and gets a walk in every day.  Don't worry, he's still the trivia king and reality TV guru we've all come to know and love. 

Medically speaking, Dan's doing just fine.  He goes to weekly appointments to consult with our doctors and have his blood checked to help manage his medication doses and monitor his blood counts.  The biggest issue keeping him from feeling like himself is fatigue.  He sleeps about 10 hours a night and takes a nap every afternoon to keep up with his exhaustion.  His strength and spirits are steadily increasing, but he gets tired pretty quickly and that's a pain.  He has extreme dry mouth, some rogue rashes here and there, sore muscles, aching bones and a heart rate that can't seem to slow down.  There's always some kind of test to monitor this or check that each week, but overall, everyone seems to be happy with his progress. Again, "that's normal" is the typical response to all Dan's woes.  As you can imagine, I hate missing the appointments and require a thorough recap of everything that was said.  Luckily we joined the iPhone team so I'm hoping to Facetime one of these consults - Dan isn't going for it (I think I embarrass him).  The next big milestone is a bone marrow biopsy and spinal tap in April to check for recurring disease in his marrow and spinal fluid.  They're routine six-month post-transplant tests, but we'll surely be on edge as we approach the dates.  While everything is going well, the possibility of relapse is real and weighs on our shoulders every minute of every day.  Keep the prayers steady that his donor cells are keeping leukemia away for good!

I often talk about little joys and searching for them in every day, maybe most especially during times of adversity and fear.  As we reflect on the little joys we found in November, when a get well card brought us a smile during the toughest times, and December, when a cloudy day spared the rain so we could enjoy a walk, to January, when a warm bath and a good book gave me peace from my caregiver obligations, I'm reminded how very key joy is in living a full life.  Today there were little joys all around me, everywhere I looked.  It's easy when the sun is shining, you're in good health, and everyone is smiling.  It's easy to tell my husband I love him, to feel spring in the air and to thank God for my blessings at Sunday Mass.  But I think it was finding joy on those hard days that taught both Dan and me to live fully, in the truest sense.  We live joyfully, we love wholly, and we laugh sincerely.  Now, I am by no means thanking cancer for teaching me this lesson.  I'm thanking all of you - my family, my friends, and my faith - for bringing us joys, even the ever-so-little joys on the ever-so-dark days of the past year.  I hope to carry that mantra with me and to share it with everyone I meet.  I hope all of you find little joys and live as happily and with as much love as we do.  Because life is good.  And ALL is well.   

 

Day 100 - So Long, Seattle

We're having an emotional day here in Seattle as we prepare to turn the page from this chapter to the next.  In the months since Dan's leukemia returned, we've been scared,  devastated, hearbroken and angry.  We listened to doctors tell us that treatment options were growing fewer and that this disease was a real threat to Dan's life.  We searched for protocols and clinical trials, we consulted with oncologists nation-wide, and prayed with family and friends that something would work so Dan could at least have the chance at a transplant.  But through it all, despite it all, and because of it all, we searched for hope and we kept the faith.  We practiced finding joys in the truly small things.  We quite literally lived each day like it was our last and we made memories along the way. 

It's day 100.  We're here.  We made it.  Dan beat the odds.  We finally heard the words complete remission.  There were more than enough ups and downs, twists and turns on this rollercoaster and we're ready to get off, for good.  So long, Seattle.  Good riddance, leukemia - see you never.

 

Now sit back, relax and share in our joy as we celebrate where we've been and how far we've come.  We did it together and we did it in love.  We have so many of you to thank on this very special day.

100 days

(I am not tech-savy enough to embed this video in the blog so you have to open a new window! :))



    

Day 97 - Homeward Bound

The last few weeks have been a whirlwind of tests, meetings, classes, and consults to prepare us for the more than year long chapter of our story that will be termed "long term follow up".   After more than four months we will officially leave the care of the yellow transplant team, the SCCA clinic, and the Pete Gross House and head home to the care of our Georgetown team and, of course, our family and friends.  While we couldn't be more excited to transition to this next phase of recovery, it brings with it a number of new complications and continues to require quite a bit of medical management.  We're learning firsthand that this recovery will be slow and are coping with the "new normal" life after transplant.  Dan takes tons of pills, tires easily, requires a nap a day and suffers from aches and pains on a regular basis.  Every few hours there's an IV to pump,  a medication to take, or a temperature to log and he is encouraged to exercise twice a day to rebuild his deteriorated muscles (we want Dan to get back to his beefy self!).

 

For at least the next 3-6 months, Dan will continue his current regimen of medications, weekly doctor visits, bloodwork, daily IV magnesium, and special diet with immunosuppression precautions. We're getting the "okay" to go home, but not much will change right away regarding Dan's medical status.  We will closely monitor symptoms at home for possible graft-versus-host disease (GVHD) complications until Dan is off immunosuppressant medications that currently keep the peace between the new and the old Dan.  Right now, he and his donor continue to invade each others' space (recall the sandbox analogy) so decreasing his immunosuppression is very delicate and way too complicated to explain in a paragraph.  While the drugs keep his immune system suppressed, Dan is much  more susceptible to getting sick, hence the excessive hand washing, isolating from crowds, avoiding sick people, and following a special diet.  Naturally, we'd like him to be off these medications, but the risk of his body flaring in severe GVHD (an epic sand fight) is too large so our team is recommending we continue the medications for the first year.  

 

In other news, my parents came for a quick visit this week to celebrate the good biopsy results and lug home a few checked bags of our stuff back to PA.  We gave them the clinic/hospital tour, ate some great meals, visited a few tourist attractions, and made plans for the transition to our new "regular" life at home.  It was a great visit and geared us up even more about heading east.

     

a day at the clinic

We're experiencing a lot of emotions about going home that include excitement, joy, and relief, but we'll also scared, anxious, and overwhelmed at the thought of this going on for at least another nine months and likely longer.  The transplant took a toll on every part of Dan's body and the repercussions of that are lifelong.  We are blessed and always grateful to our medical team for safely getting Dan to this point, but we have a long way to go and many risks ahead.  We thank God every day that the leukemia is gone and ask for strength and endurance to continue safely to the finish line.  We can't live our days afraid of relapse or obsessing over signs of GVHD.  What we can do is live and love fully, find little joys every day, love our family, cherish our friends and take care of Dan today.  We've learned a lot about that in the last three and a half years and even more in these 100+ days, but we will continue to remind ourselves of our blessings to muster up the courage we'll need in the future. 

 

The leukemia is gone.  We got what we came for, but this journey is not over.  Dan's progress is slow and the difficult task of getting back to normal is just beginning.   Through our faith, our family, and our friends in addition to the advancements in the research of this disease we have the strength, courage and endurance to stick with this.  We will win and ALL will be well. 

 

AHH OMG!! We're going home!   

  

 

Day 87 - Cancer-Free

When we envisioned days 80+ in Seattle, we didn't anticipate a few trips to the hospital, a lingering fever soaring over 103 degrees, or a week on the couch sleeping all day. Our trip with Evan started out as planned with Mcdonald's Mcrib eating, some Netflix watching, and Seattle touring. It all came to a halting stop when I woke up with some chills and a pretty high fever. All three of us gathered ourselves at 2am and headed to the hospital where we checked back in to 8NE at the U Dub. They took some blood cultures to look for a source of an infection, gave me a dose of antibiotics and sent us home to monitor my fever for the rest of the day. We got a few hours of sleep hoping the fever would resolve, but, it spiked again the next afternoon so I got myself a hospital admission so the docs could more closely follow my symptoms. To my dismay, I'd joined the ranks of the more than 60% of post-transplant patients who end up admitted to the hospital. After three days watching the game show network and daytime court tv, the fever resolved and they sent me home, never having discovered a cause for the fever (which is also very common). Fortunately, my discharge was just in time to have one more really good day with Evan before he headed back east. It ended up being a pretty great time for him to visit because I knew Hanna was in the hands of her big bro instead of hours at my bedside while I sleep and home alone in an empty apartment.

The next big milestone was the the routine day 80 biopsy. This was particularly significant because we knew a "negative" result for leukemia was our ticket back home to Dr. Broome's care at Georgetown and an end to this Seattle chapter of our story. More than anything, it would mean that the cancer was still 'away' and we could take some more baby steps back to normalcy. I had the biopsy in the morning and was immediately transferred to the triage room for further evaluation with another temperature spike. At that point, we were so over the back and forth with a fever that could not be explained. We finally got home and began an agonizing 24 hours of suspense trying to be normal and waiting for the results while monitoring my temperature for another spike. We went through the motions of eating dinner, swallowing pills, taking my temperature, and watching The Newsroom and possibly Teen Mom 2 (I'm going to claim that the fever blinded my judgement on that one).

Wednesday morning, Day 85, we got the call that the biopsy was clear of leukemia and I was cancer-free!!!! Hanna and I immediately started crying, hugging, and dancing....and I may have told the doctor I loved him. This was the news we knew lead to two tickets home in a couple weeks. This was the news that means the new cells are taking over and doing their cellular thing (that's technical medical jargon there, sorry for being so scientific). Once the dancing stopped, we spent the rest of the day smiling at each other and thinking beyond Seattle for the first time. We know that this is nowhere near the end of this journey. There will still be several years of frequent doctor visits and more scary bone marrow biopsies. But, it does mark the end of the Seattle chapter which has been equal parts exhausting, wonderful, scary, and hopeful. We close this chapter with stronger love, deeper faith, and a brand new outlook on life.

I know I have said it a million times but I just know that this would not have been so successful without the love of my life by my side through it all. Hanna has been the loving wife, selfless caregiver, and friend by my side to laugh, cry, or just hold. This week, more than any, I needed her and she was there every second. I am so blessed to walk this journey with Hanna and to know that we will continue to walk our journey for many, many years to come. We have been reflecting and talking about all the memories, good and bad, that we have made here in Seattle. We have also been talking about the people and things that we are so excited to see when we get back to the east coast. We haven't seen our Alexandria apartment in over six months and miss the comforts of our real home. We are truly counting down the days and can't wait to make this transition. Thanks to all for the constant and continued love, support, and prayers....you help us to know, without doubt, that....

ALL Will Be Well


"Clear Eyes, Full Hearts, Can't Lose"

"In the Evening of Life, We Will Be Judged on Love Alone"



Toasting to cancer-free!

Day 72- Side Effects

Muscle cramps.  Fatigue.  Sunburn.  Side effects.  That's what seems to consume our days as we creep closer and closer to day 100 in this wet, rainy, cloudy, yet beautiful city.  The side effect management also seems to be ever-changing, compelling almost daily trips to the drug store to try our luck at a new remedy.  Excruciating muscle cramps keep Dan awake throughout the night and continue to throb during the day, further contributing to an already present fatigue that keeps him from feeling like himself.  He wakes up feeling tired then works hard to be active so he can take a nap in the afternoon when the exhaustion really kicks in.  On top of that, his muscles have all but completely deteriorated from the prednisone, so he'll get some physical therapy at the clinic to keep his muscles from wasting away any more.  The UV treatment that manages the GVHD rash has caused some pretty uncomfortable sunburn that now requires full body aloe and moisturizer massages twice a day (funny, I haven't heard Dan complain about them yet!).  Another nuisance in our daily routine is two, 2-1/2 hour infusions of IV fluid with quite a bit of magnesium to supplement a magnesium level Dan isn't able to maintain - yep, that's a normal medication side effect - and, yep, magnesium infusions have side effects, too.  On top of making him run to the bathroom every hour from the fluids, the magnesium makes Dan feels very flushed and hot, turning his cheeks bright pink.  While I assure him he looks cute, he's not buying it.  I guess the gist of it is, Dan's tired, he's weak, he's sore, he's in a variety of types of pain at any given time, he's anxious, and he's ready to feel better.

It's easy to see why our team keeps such a close eye on Dan - turns out this whole bone marrow transplant thing is really very complicated.  Things are going as well as can be, but while the donor marrow and Dan hash it out, his poor body gets quite a beating.  Dan's progress has plateaued somewhat from the leaps and bounds of improvements he made soon after the transplant.  He feels so much better than he did a month ago, but still doesn't feel completely normal.  We've been at this a long while now and feel at a bit of a lull. 

Although we're pretty much "over" dealing with all of this, I assure you, we're still finding our little joys.  We always feel at least a little anxious watching a rash, treating a rash, hanging IV fluids, meeting with doctors, nurses, nutritionists, pharmacists, not to mention the always-looming fear of relapse, but despite all of that, our life out here is pretty great.  We spend nice, quiet mornings drinking coffee and watching the news, fun afternoons exploring the city, and relaxing evenings catching up on shows or playing a game.  We get to spend every minute together and have developed a whole new language from all of the inside jokes we've made.  We treat ourselves to coffee, dessert, and snacks anytime and and have no where to be except a couple appointments throughout the week.  We feel the love from all over the country through mail, packages, texts, and emails, every day.  All of these things make managing the side effects a lot easier.  This is why we're here.  This is our job.  Dan is a patient and I am a caregiver. 

 

We're gearing up for a visit from my brother, Evan this weekend and are looking forward to showing him around our new home.  Soon after he leaves Dan will have his final biopsy before we can make plans to move back home! It's not scheduled yet, but start kicking up the prayers that things continue to look good.  ALL is well and we'd like it to stay that way :)

Much love,
Hanna


HAPPY NEW YEAR!

 

 

Day 61 - 2012, We Bid You Farewell

Great news! Dan's second biopsy came back negative for leukemia cells - no cancer to be found! We are thrilled by the "negative" results  and are finally able to see a light at the end of this 100 day tunnel.  The next hurdle is one last biopsy here around day 80 before the home stretch and long-awaited transcontinental flight back home.  We are so ready.

Our clinic visit this week was uneventful.  The doctor dubbed Dan her most boring patient!  The GVHD rash is managed with the UV light treatment, cream and steroids.  We hang fluids twice per day and Dan follows his rigorous pill schedule, swallowing a cocktail of medication every 2 hours, adding up to at least 20 pills every day.  He has to eat every hour or so to keep up with his appetite (steroid side effect) and spends about an hour per day walking, stretching (yep, Dan does yoga), or climbing stairs to build the muscle that's deteriorated (steroids, again) the last few weeks.  I have become quite familiar with the variety of uses for bleach and find myself sterilizing countertops, remote controls, cell phones, light switches, door handles, fridge handles, microwave handles, and any other handles I can find at least once per day.  I've been expanding my cooking skills a great deal and continue to introduce Dan to a variety of vegetables that he relentlessly turns down.  Alas, I am not giving up.

Dan's immune system is still very immature and not equipped to fight the various germs it encounters, but he can't live in a bubble and we get out as much as we can. Once again, I envision similarities to parenthood as we have our own version of a "diaper bag" we can't leave home without.  We pack snacks, medication, IVs, tissues, chap stick, hand sanitizer, and sanitizing wipes before we step out the door and we make sure we're home in time for an afternoon nap.  We won't have to be quite so cautious forever, but Dan and his new immune system are still getting acquainted.  Our nurse put it like this - Dan and his new blood are like two young siblings in a sandbox.  They argue and throw sand when they're little, inflicting some scrapes, bumps and bruises, but eventually they learn to get along and become best friends.  Right now, the old Dan is still there but with new, foreign, blood running through him.  The "arguing" is flares of GVHD, managed by steroids and other immunosuppressant drugs that keep the new blood from wreaking too much havoc (think fistfuls of sand throwing - and hitting - and hair pulling).  It's a delicate balance between suppressing the new immune system while also allowing it to settle in, hence the 100 day stay and millions of side effects, complications, and issues to manage.  After a time, usually 6 months to a year, the new and the old will live in harmony, then Dan won't need drugs to suppress the new immune system because it will be his.  Dan joked that he and his new marrow will be chumming around at family picnics together in no time.  

The new year starts this week and we couldn't be more excited to say goodbye to 2012 and welcome 2013 with open arms.  We feel more hopeful than ever and know that we've been blessed to get this far.  We don't take a single moment for granted, especially when surrounded by many sad and tragic stories right here.  Cancer touches the very young, the very old, and every one in between and we see it every day.  We see the sadness and we've experienced the fear.  We don't worry about little things because we've been given the perspective that little things just don't matter.  We laugh as much as we can, we hug, we cuddle and we say "I love you" every chance we get.  And when all of this is behind us, when leukemia and "that one Christmas we spent in Seattle" is a faint memory, we'll continue to live this way.  We'll remember what we saw here, the joy, the sadness, the loss, the inspiration, and the love.

So, while I sort of hate you, 2012, you weren't all bad.  At each experience this year, I managed to find some silver lining to remember.  I'll remember how I loved my husband more deeply and how I fully committed to his care.  I'll remember how the most loving, dedicated family supported me and encouraged me to face each day.  I'll also remember my lesson in humility when I graciously accepted the gifts of so many. I'll remember how blessed I was with countless friends, old and new, who lifted me up at every hurdle.  And I'll always, always remember how I found joy from all of you during the hardest year of my life.          

2013, we can't wait to meet you!

Hanna

Day 50 - Joys at Halfway

Here we are, halfway between day zero and 100 and things couldn't be better.  We just got home from our weekly clinic visit and it was the smoothest one yet.  The rash is clearing up since the PUVA treatment (basically a tanning bed - Dan wants a lifelong prescription), the energy is coming back, appetite is full-swing, and spirits are high.  We're going out and doing something every day and working hard to keep Dan healthy.  We had a great visit with Patty, Dan's mom. We showed her around the city, the clinic, and enjoyed some good old conversation.  She spoiled us with way too many Christmas presents, but we aren't complaining! We rang in Dan's 32nd birthday at a local Indian restaurant, which also marked his first dining out experience post-transplant.  We were happy to share that milestone with Patty.  The next routine biopsy is next Wednesday, the day after Christmas, so pray results continue to be clear of leukemia and things keep moving in the right direction!

"December 19, 2012 Day +50, halfway there!"

We woke up Friday to the terrible news of the Sandy Hook tragedy.  Our hearts broke as the story unfolded and we learned the number of children and adults killed at the hands of a ruthless gunman.  It is impossible to comprehend the pain of the affected families and the incredible loss they must feel.  We, along with millions of Americans, prayed for the families and the souls of the victims at Mass on Sunday.  As I reflected, the popular saying "God only gives you what you can handle" came to mind.  To those who have said this to me, thank you for thinking I am "handling this" well; however, there are so many days I wish I could say "I can't handle this anymore" to make it stop, but I know it's not that easy.

We believe that in difficult times, God gives us the strength to face our fears and our grief through the grace of others - our family, our friends, and many we've never met.  We believe we "handle it" because of the outpouring of love, support and prayer we receive each and every day.  We stay strong and "handle this" because we feel loved and because we have purpose, because we are at the best center for this disease and because we have faith.  The only thing we can do during a difficult time is support each other.  We can pray for strength, cherish our loved ones and celebrate little joys wherever we find them.  A little joy is a thoughtful card in the mail, a pleasant conversation with a stranger, or a casual walk on a nice day.  Sometimes we have to get creative to find joy, but we find it.  And we cherish it. And we celebrate it.  So in a time when so many are getting creative to find little joys, please take a minute and pray that we continue to find ours, those who've lost loved ones can begin to find theirs, and truly appreciate yours, rejoicing in them as we grow ever closer to Christmas day.        

Hope you have a merry Christmas full of JOY,

Hanna