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

Day 42 - Some New Marrow's Debut

I am making my official return to the blog after a couple months away and out of commission in the hospital feeling pretty crummy.  So glad Hanna very beautifully kept everybody posted on the happenings out here in Seattle.  The last 10 days have seen nothing but great progress as I continue to eat better (thanks mostly to Hanna cooking some amazing meals), exercise more and feel better overall.  It is such a wonderful blessing to be in our own Seattle apartment which we have home-ified and Christmas-ified quite festively.  It makes for a better environment to strengthen and become myself more and more everyday. 

Last week we received the good news that the first biopsy showed good results and was negative for leukemia!  We sighed in relief and have a chance now to put those thoughts/fears aside for a few weeks.  The results of my spinal tap were also negative, a wonderful word to keep hearing.  So basically, our full-time job is to manage my pill regimen (more difficult than it sounds) and continue to get stronger.  The gut GVHD is completely cleared up and we continue to monitor and treat a GVHD rash with steroid cream and prednisone.  I've had a series of skin biopsies to diagnose it, increased the prednisone to treat it, and consulted with GVHD specialists who watch closely to keep the outbreak as mild as possible.  Our team assures us that most patients develop GVHD and we can expect it to wax and wane throughout my recovery.  The prednisone works wonders on the rash but is not without adverse side effects.  The balancing act continues between managing the GVHD and medication side effects, but, all in all, I'm doing really well.    

Hanna and I have been enjoying Seattle as much as possible, despite the pretty constant mist - guess that's the Pacific Northwest for ya.  The market and downtown areas are decorated for Christmas which makes everything significantly more jolly.  The Seattle Cancer Care Alliance continues to impress us with their staff, efficiency, and care for their patients and families.  They had a Christmas party for all of the patients on Saturday with hot chocolate, cookies, Santa, a string quartet performing the classics, and a gift for each patient and caregiver.  It was a really nice event that put smiles on many faces, including our own (see below).

Never too old for a picture with Santa - we spared his lap, though

The highlight of this week is my mom's arrival.  She is flying in on Wednesday and staying with us until Sunday.  We are excited to spend my birthday with her, show her the clinic, see some of Seattle, and just spend some nice down time.  We're really looking forward to some good mom hugs, too. 

The next few weeks will be an Advent season like we have never had before, but something about it feels so appropriate and comforting.  This is a time of waiting and preparing for the birth of Christ.  We did our fair share of waiting and preparing for my own new birth with my new cells.  So this time of anticipation and hope has taken on all new meaning this season.  My next bone marrow biopsy is scheduled for day 56 which happens to fall on Christmas day.  They will probably move it by a day or two but there is something inspiring about sharing our own personal moment of anticipation and hope with the culmination of hope that is Christmas day.  This will be a very special Christmas for Hanna and me, as well as all of our amazing friends and family who have supported us, lifted us, and joined us in such an amazing way.  We are so lucky to have so many who have walked every step along with us.  This Advent and Christmas will be one to cherish, one that will change our forever, and one that is inspiring us to know, without doubt, that

ALL Will be Well



"It is the beautiful task of Advent to awaken in all of us memories of goodness and thus to open doors of hope."

Day 32- the Advent of a new man

We have been quite busy the last few weeks so I apologize for the lack of information on Dan's progress.  He promises me he will make his post-transplant blogging debut soon, but I wanted to share the latest first.  Dan responded very well to GVHD treatment and his symptoms cleared up within hours of his first dose of steroids.  He was discharged from the hospital on day 21 to continue treatment at home.  It was an emotional exit as we closed the door to one chapter of our journey and opened the door to the next.  Dan hadn't set foot outside his hospital room in over two weeks and hadn't smelled fresh, albeit rainy, air in almost four. We loaded up with prescriptions and medical supplies galore and off we went.


 

I liken our first night to bringing home a brand new baby.  I imagine that, while you are excited to have your baby home, there is probably some anxiety with the realization that you are 100% responsible for its well-being.  By the time we got home Dan was due for his evening meds so I nervously rummaged through a pile of bottles.  It was impossible to sort them out in my head so I  became overwhelmed and almost regretted consenting to Dan's discharge.  Needless to say, neither of us slept much that night as our heads spun with "what ifs" and a complicated medication schedule.  Groggy and anxious, we headed to the clinic our first day home to meet with the "yellow team" doctors, nurse, and dietitian.  I spent some time creating a spreadsheet to log Dan's medications, IV hydration, temperature, food/drink, and exercise.  Everyone remarked positively about Dan's progress so we went home from an overwhelming day feeling a little more confident and a lot less anxious.  The first few days Dan spent much of his time relaxing and taking it easy while making slow, steady gains in eating, drinking, and exercising to rebuild his strength.

 

We had a blessed Thanksgiving with my brother, Colin and sister-in-law/high school friend, Kathleen who flew to the Pacific Northwest from Alabama. We shared lots of great meals, took some nice walks, drank seasonal Starbucks treats, and enjoyed quality down-time we'd all been craving.  When they left on Tuesday, Dan was eating and drinking about 75% of his normal amount and walking almost three miles a day.  The sun peeked out a few times so we even got to enjoy many of Seattle's best tourist sites! We are so grateful to "the Alabama Gablers" for spending a special Thanksgiving with us that we will cherish forever.     

 

So here we are on day 32 and things are going as well as can be.  Dan takes medication about every three hours adding up to more than 25 pills a day, in addition to liquid medication, IV hydration, and our newest addition, steroid cream.  Some skin rash GVHD popped up so we're applying a cream three times per day.  Between picking up prescriptions, having bandage changes, rashes, questions, in addition to regularly scheduled appointments, we have been back and forth to the clinic at least once every day.  It really is a full time job for both Dan as a patient and me as a caregiver, but that's why we're here.  We have taken a break from our "normal" life to make this our full-time gig, and so far, so good.  We've officially completed one third of our stay here and we're encouraged about the next two thirds.

 

As I mentioned on facebook yesterday, Dan had a routine bone marrow biopsy to determine the percentage of Dan's marrow that is his versus his donor's.  He also had the first of four routine spinal taps with chemo to keep any disease from developing in his spinal fluid.  We won't have results until at least Monday so I will do my best to paraphrase results as soon as we get them.  As always, we're anxious (not worried) about what pathology will find, but we are enjoying the weekend and keeping the "what ifs" out of our minds.  We are all decorated for Christmas and look forward to the start of the Advent season tomorrow, which marks the prayerful beginning of the preparation for Jesus' birth.  It will certainly be a different kind of Christmas, but we have many blessings to share since Dan's new "birth" just 32 days ago. 

 

Hope you all have a Christmasy weekend-

 

Hanna   

 



Day 18 - Expect the Unexpected

The past few days have been stressful, tough, and full of anxiety as we face our first bout with the unexpected.  About a week ago Dan started having diarrhea, a very common (and expected) side effect from transplant treatment.  After it continued for days, he tested positive for a bacteria called C-Diff, another common consequence from extended antibiotics.  Dan started a new series of antibiotics that were meant to clear up the bug and his diarrhea; however, quite the opposite occurred.  The volume continued to increase to a concerning level so doctors started mentioning the dreaded phrase - graft versus host disease (GVHD).  In short, GVHD happens when donor cells attack the recipient and begin to kill cells they don't recognize.  Dan is on medication to help the cells work together, but often there is a battle between donor and recipient that result in some, sometimes very serious, complications.  Yesterday, Dan had an EGD procedure where a camera examined the linings of his digestive tract.  Results confirmed moderate GVHD so steroid treatment started right away.  We're upset that we are facing an unexpected complication, but are grateful doctors caught it early and started treatment right away.  GVHD is a very common complication that is successfully treated in many cases.  Please continue to pray that Dan responds well to standard treatment and "the big d" (as the Lyons family has dubbed it) clears up over the next few days.

In other news, and probably worth mentioning first, Dan has reached a white blood count of 500! He has to stay over 500 for three days in a row to officially officially be engrafted, but we are on day two and optimistic.  He is feeling so much better overall and is currently enjoying a milkshake in his chair watching Notre Dame on their way to 11-0.  Dan is seeing a physical therapist to rebuild his strength and teach us the right way to exercise post-transplant.  The PT quickly learned Dan's competitive spirit when he insisted on more reps, steps and stretches than he was asked.  His mucositis cleared up and he's had a normal temperature for days.  The IV nutrition is gone and there are fewer and fewer bags hanging on his pump every day.  Basically, if it weren't for the GVHD he would be on his way out of here.

We've been feeling the love from all of you through your cards, emails, and facebook posts.  Every day, but especially on the hardest ones, it's great to smile for a few moments when reading the words of family and friends.  My mom surprised us with 90 countdown bags labeled by day and filled with items from our family.  Each bag has a note, comic, picture, or prayer to pick us up and give us a smile.  We love opening the bag each day and guessing who sent each item (something tells me my dad is responsible for the wishbone from family dinner).  The pile is already shrinking as we make our way to 100!

much love and big hugs - and don't forget to pray that the big d goes away so we can go home and spend Thanksgiving with Colin and Kathleen!

H