Christmas Spirit

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

the annual champagne cork-off

sweet Ellen Hanna and her pearls

dinner time :)

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

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

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

That is our Christmas Spirit.    

What a Difference a Week Makes

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

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

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

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

ALL is well and we are grateful.

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

Making his way to normalcy, little by little

    

 

A 365 day milestone

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


140 card pick-up

Seattle memories in a basket

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

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

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

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

ALL is well in cancer free. 

a kiss and a cupcake for my birthday



Rehab with a Dose of Chemo

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

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

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

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

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

All smiles on our comfy couch

The Aftermath

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

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

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

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

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

Prayers, Courage, Perseverance and the other PCP

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

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

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

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

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

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

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

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

                                                    some PT with Patty

 

                            a little speech/swallowing therapy

        

                                   finally getting comfortable on 2Bles

   

                                                             

                                 fresh air kisses

9 Months, a Fork in the Road

I'll structure this post the way I was taught in school to structure eligibility meetings in the special education world.  When dropping the "your child has a disability" bomb to parents, always start with a positive, gently and compassionately explain the negative, and conclude with a few more positives to leave a devastated parent feeling hopeful.

The bone marrow biopsy was negative.  The spinal fluid was negative.  Dan does NOT have leukemia. We are thrilled that Dan's transplant has not been considered a failure.  We're overjoyed that the graft seems to be doing its job and that his marrow is 100% donor cells.  We're grateful that the leukemia cells were isolated to one sanctuary site and don't appear to have escaped outside the testicles at this time.

Dan will begin an 18-month chemo regimen starting this Friday. We consulted with our doctor yesterday to listen, discuss, consider, and then decide on what we agree to be the best choice to address an isolated testicular relapse.  Our decision mostly came down to odds.  We speculated back and forth, up and down, the odds that leukemia would come back "if".  Unfortunately, there is no right answer and there is no way to know which protocol can/will definitely keep cancer away.  There is no study and no data to support our decision without hesitation.  We considered many expert opinions from many renowned facilities and ultimately trusted our doctor's educated advice on which protocol would most successfully treat Dan.  We chose a conservative approach that aggressively treats while hopefully allows Dan to go back to school and continue to get back to our goal of a normal life.  We don't have a calendar of dates/drugs or a copy of the protocol yet, but I can share what we know/remember for now:

• The regimen kicks off with  four weekly IV infusions of familiar therapies Dan's had in the past.  He'll get testicular radiation and frequent spinal taps with chemo to keep tabs on the sanctuary sites for leukemia.  Infusions eventually become monthly with a daily chemo pill regimen.
• Unlike our usual experience with chemotherapy, we aren't treating leukemia at this time.  There are no biopsies to monitor progress and we aren't watching a number of blast cells decrease.  It is, unfortunately, a waiting game quite similar - in fact, quite exactly - to what we've been doing the past four years.  We are approaching this protocol as a proactive therapy to keep leukemia away.  We aren't reacting to cancer in Dan's blood, we're hoping to prevent cancer from ever developing there. We think/hope/desperately pray that after 18 months of chemo, Dan's marrow will finally, finally, have gotten into a rhythm and we can drop leukemia from our vocabulary.  

Dan doesn't have cancer.  The marrow looks perfect.  The donor graft is doing its job. We are obviously disappointed and terribly upset at the thought of another day 1, a chemo calendar, chemo side effects, losing hair, managing side effects, more pills, more appointments, more doctors, and more time away from normal life.  But we are hanging on to this donor now and praying that taking this proactive approach will be worth it in 18 months when Dan will still be cancer-free. Nine months ago today Dan had his bone marrow transplant.  Since then we've had a pretty smooth ride with a few bumps in the road, all on the "normal" path to recovery.  We've been moving forward for nine months and have come to a fork in the road.  We've veered off the straight path of "normal" recovery, but we will still get there. We'll plug along through the calendar of chemo for 18 months and we'll continue to live every day finding little joys and cherishing our time together.  We know that relapse is a very real possibility but won't dwell on that chance.  Instead we'll follow the protocol, we'll trust in medicine, we'll have faith in prayer, and we'll live with hope. We'll live with the hope that ALL will be well.  

Celebrating negative biopsy and spinal fluid results

Leukemia's Sanctuary

It's been a week since Dan had a testicular mass removed during an uneventful, successful surgery at Georgetown.  It's been a week of hoping that Dan had testicular cancer and that he was just the unluckiest guy in the world to get two different types of cancer by age 32.  A week of ice packs, Percocet, naps, parties, batisms, and birthdays.  Dan's cancer is ALL.  For the fourth time, we've been shocked and knocked down by the words "the biopsy showed leukemia".  This time, hiding in its notorious sanctuary site.  A place that's resistant to chemotherapy and a sanctuary for leukemia to go unseen.  A place treated with extra doses of radiation that we'd hoped would keep it away.

Today we'll spend the day at Georgetown meeting with our urologist and hem-onc team.  The urologist will discharge us after checking the incision site and then we'll make our way to the Lombardi center we've come to call a second home.  Of course, Dan can look forward to a bone marrow biopsy to evaluate his marrow and see if there are abnormal cells developing there.  He'll also have a spinal tap to check the brain fluid for leukemia hiding in its second favorite sanctuary.  The results of these tests will be back next week and our teams will collaborate to come up with a unique regimen of treatment to kick this cancer yet again.  We'll meet with our doctor Monday the 29th to get started.

Leukemia is smart.  Treating it is hard.  It runs through the blood but also hides in the testicles and brain fluid and can go undetected sometimes.  These two "sanctuaries" are resistant to chemo and need to be targeted specifically if leukemia develops there.  It's possible that the leukemia cells are limited right now only to one sanctuary site and have not developed yet in his marrow.  There is a range of possibilities that only test results will confirm, but we're praying it's restricted to the testicles right now.  Treatment options vary as well so I won't speculate here until we have more information.  For now, just pray we caught it soon and that the spinal tap and bone marrow biopsy come back clean.

We're doing okay and hanging in there.  We've learned from doing this so many times now how to balance tears and fears with moments of joy.  We give ourselves time to be sad, to cry, to lament in sorrow and then we drag ourselves out of that place and into the present.  The here and now of this very moment.  Dan is feeling great, we have each other, I'm not working and neither is he.  Mornings are hard but we're approaching today with hope that test results will come back clear of leukemia.  We're going to enjoy our weekend and put this aside as best as we can.  As always, we'll find little joys in spite of leukemia.  

Thanks for the outpouring of love and prayers yesterday and as we prepare for battle again.

Day 250 - A Trip to the Urologist

"You have cancer" were words we never thought we'd hear from a urologist today.  The "c-word" we never wanted to hear again.  A mass we never wanted to find and a specialist we never wanted to see.  Dan has cancer.  Again.

It started last week when Dan found a "lump" that prompted us to interrupt our doctor's California vacation with a frantic text.  She advised us to head to the ER so off we went.  Now, last weekend was not just any weekend for us.  We happened to be in northwestern PA at my storied family reunion so we made our way from the family campsite to the local hospital for an exam.  The doctor there referred us to a urologist to take a further look at the "mass" after he ruled out some simpler causes.  He dropped the "c-word" and discharged us back to camp.  Needless to say, our spirits were shot, but we did our best to muster up some strength to put this news aside and enjoy our weekend with beloved family and friends.  We interrupted our doctor in California one more time and she set us up with a urologist appointment this afternoon.    It was a great distraction up in PA, but we were ready to get home and get some answers.

Here's what we know:  Dan has a small to medium mass in his left testicle.  It is most likely cancer.  The way to deal with masses there is to surgically remove the testicle and then biopsy the mass to plan subsequent treatments and/or observations.  Testicular cancer has at least a 90% cure rate with minimal changes to life after surgery; however, there is a "wrinkle" (doctor's word) given Dan's "history".  Sometimes a mass in the testicles turns out to be lymphoma (a similar type of blood cancer to leukemia that presents as a tumor/mass).  This is unusual in most people, but given Dan's "history", the risk of lymphoma hiding there is slightly elevated.  The doctor today was confident that the tumor looks consistent with testicular cancer.  We don't want Dan to have testicular cancer, but we really don't want him to have lymphoma - and we won't know for sure until after the surgery and the biopsy results come back.

We got home a few hours ago and are still processing the fact that Dan has cancer again.  We are happy that it doesn't appear to be related to his previous cancer, but are devastated at another set-back from normalcy.  We are anxious about the surgery, the biopsy results and any possible radiation/treatment Dan might need to kick this thing for good.  We will likely "have a urologist" now and can add that to another team of specialists who already look after our dear Dan.  We can expect CT scans in our future and close observation of another part of Dan we didn't know we needed to observe.  We spent the afternoon in a new ER on Friday and a new building at Georgetown today.  Dan is having his first surgery.  We are tired.  We are exhausted from worrying and from speculating.  We are still looking forward to the two-week stretch without seeing a doctor.  We are hopeful that this will be in the past next week at this time and Dan can get back to recovering from the bone marrow transplant he had just 8 months ago.  We are optimistic that ALL will be well, just a little later than sooner.

Dan is doing great.  He's feeling better than ever.  Thankfully he found the mass and fortunately this cancer is curable.  The surgery is not scheduled yet but will be sometime later this week.  It will be outpatient and hopefully our summer plans aren't interrupted.  We can't wait to see our niece baptized this weekend, to gather with friends for a long weekend in a lake house later this month, to spend quality time with family at the beach, and witness some great friends get married in August.  We know we are loved and have so many people carrying us on this journey.  Thanks for your continued prayers and extra muscle strength as we climb up another hill on our way to the top.       

Day 230 - School's Out For Summer

We did it.  Summer vacation is finally here.  Back in February when I started my temporary position at a middle school, I was filled with anxiety, nerves, and even some regret each day when I left Dan at home and made my way to a brand new job.  We needed the money and a sense of some normalcy so we convinced ourselves we'd made the right decision and I put on my brave face and went to work. Fast forward four months and I find myself with new friends, new skills, and a new appreciation for middle schoolers and their sometimes awkward, adolescent ways. I've fallen in love with my school, the teachers, and have enjoyed unique experiences working with the special population of students there.

But now it's summer, and I'm so ready for it.  What teacher isn't ready for a few months off after 10 months of hard work? I know the non-teachers reading this are having their annual "Why didn't I become a teacher again?" moment. This summer, Dan and I plan to maximize our time and take advantage of a summer without cancer.  I've only been at this whole "working" thing a few summers now and they've always involved the disease in one way or another.  We're planning a good, old-fashioned summer full of trips to the pool, beach, mountains, baseball games and surely a few happy hours in between. We are booked up almost every weekend of the summer and plan to enjoy every minute of it.

All is quiet on the medical front.  Dan has been acing his weekly blood tests and continues to  light up the Lombardi Center every Thursday with his positive attitude and contagious grin.  He still has to go weekly because there is always a new symptom/side effect to discuss/assess, but we are hoping to get his visits to every other week in the near future.  His GVHD medications continue to change pretty regularly (based on symptoms) and that always seems to affect him in some way.  Sometimes he's extra tired, extra rashy, extra achy, extra dry, to which we shrug and encourage his host and the graft to get over themselves and learn to live together once and for all.  They still seem to be hashing it out, but we're living a pretty almost normal life in spite of it and doing more and more while thinking about cancer less and less.  Since Dan is on so few immunosuppressant drugs these days, there are fewer eating/activity restrictions, so he's enjoyed some sushi, wine, burgers, and also plans to take a dip in the ocean as soon as possible. 

Last summer when I packed up my classroom, I had no idea what layed ahead or what my life would be like when I returned to work.  Last summer we didn't know if we'd have another one together.  Last summer when we got on that plane and flew 3,000 miles away we had no idea what we were about to go through, the odds we'd face, the fear we'd know or the courage we'd muster. Had we known we may not have had the strength.   While last summer is a not-so-distant memory, we're looking forward to making very different memories this summer.  We are filled with happiness, hope and health.  We're almost 8 months post transplant now and getting closer and closer to the one year mark.  Every single day Dan's graft does its job is a day closer to using the word cure.  Keep the prayers coming that Dan continues to progress through recovery.  Cheers to the beginning of a wonderful summer!

 

Day 212 - ALL Is Well Again

The four weeks of waiting have come and gone and ALL is well again! Our team decided to forgo the follow-up biopsy altogether because Dan's blood work looks great, the numbers are trending normally, and Dan feels better than ever.   It is safe to say that since his bloodwork looks good each week that the leukemia is not relapsing at this time.  Dan's type of leukemia starts first in the marrow (where they found .1%) and eventually spits out into the bloodstream.  The .1% did not multiply and overflow into the bloodstream.  No cancer in his bloodstream, no relapse.  (Pause for ridiculously huge sigh of relief).  I am so happy Dan did not have to endure the pain and suffering of the procedure itself and none of us had to endure the pain and anxiety of waiting for news.  We think Dan's graft (donor) is doing her job and eating away any morsels of leukemia she can find.  So, thank you, THANK YOU for all of the amped up prayers the last few weeks, the cards, the texts, the emails and the love.  We appreciate it, as always.

The GVHD watch is still in full swing, but the medication change to manage the .1% didn't wreak the havoc we feared - at least not yet.  Dan continues to consult with his Georgetown team each week and is finding less and less to report.  His rashes, dry mouth, and dry skin issues wax and wane, but he's gotten pretty good at managing them after trial and error with many OTC products and prescriptions.  His energy is getting better, his strength is returning, and he's finally met his pre-transplant weight.  We're still obeying the immunosuppression diet and lifestyle full of hand sanitizer, bleach, food thermometers and excessive laundry, but we're happy to comply when results are so good.  The last week or two have been truly inspiring as we make plans for the summer, for Dan to go back to work, for vacations, for family get-togethers, and for date nights.  We're so accustomed to penciling plans in and it's exciting for us to imagine using pen.  Our dreams may finally become reality as we approach the 4 year anniversary of Dan's diagnosis.  We're happy, we're healthy and we're cancer-free.  We've recently added a new "first" when Dan got his haircut on day 207 - looking sharp!

We've had a chance to pay it forward the last two weeks as my Aunt Nora makes her way to a successful end to an extremely difficult battle with lung cancer.  Last Monday her surgeon removed her entire left lung - and all of the cancer!  She has been in the ICU at our hospital-turned-home, Georgetown, and has finally turned a corner to recovery the last few days.  She is making steady gains now and we are hopeful she will make a full recovery - and a "new" life, cancer free.  My mom has been sleeping on our couch for almost two weeks and has been an amazing caregiver.  Dan and I have stood by her side and spent countless hours supporting both of them any way we can.  Unfortunately, we know what it's like to have weeks on end enduring long, painful hospital stays, both from a patient and caregiver perspective.  Fortunately, we have that perspective that allows us to drop everything and love family first, turn to prayer, challenge our faith, and trust in medicine.  It is a gift we've been given and one of the little joys we've discovered since this whole mess started.  We plan to use this gift and be for others what they have been for us.  A support, a shoulder, a friend, and a partner.     

All is well in the Lyons home these days.  We are in summer-mode and counting down the days till school's over and summer break begins.  I don't carry my cell phone into my classrooms at work anymore and I only call Dan once a day.  Dan has become a volunteer at the National Basilica at Catholic U. and is registered for classes at George Washington in the fall.  He has accepted a fellowship that will get him in the classroom teaching supply and demand curves to freshmen during their intro to econ course.  We are getting glimpses into the old normal.  We are non-commital because Dan still has hard days, but the everyday fear is diminishing. 

We are finding little joys everywhere.     

 

6 months, .1%

I expected to update the blog this week with good news from Dan's 6-month routine bone marrow biopsy. Unfortunately, the news is not so good.  We got a phone call last night around 6pm after several days of waiting, wondering, creating "what ifs" in our head, and praying that the biopsy taken last Friday was cancer-free.  No news is good news we heard, and The doctor just hasn't had a chance to call we hoped.  After entertaining those thoughts we let our minds wander to, It's never taken this long before, something must be wrong, they're coming up with a plan before they call. 

Dan's biopsy showed .1% ALL cells.  Now, the positive (and what our doctor opened with) is that 99.9% looks beautiful.  Normal.  Cancer-free.  After much deliberation and consultation with the long-term follow-up team in Seattle, our doctors came up with a plan that will hopefully take care of this tiny, tiny amount and get back to 100% normal cells.  There will be another biopsy in 4 weeks to see progress.  4 weeks.  4 weeks of waiting, wondering, creating "what ifs" in our head, and praying that the plan makes Dan cancer-free. 

I mention immunosuppressant drugs on here a lot.  That's because Dan is on a lot of them.  Each week, his doses of these medications are monitored and changed based on his blood work and any overt symptoms (e.g., rashes, dry mouth, etc) that suggest graft-versus-host disease (GVHD).  GVHD can be very bad.  It can be fatal.  If GVHD flares badly, there can be life-long effects and on-going complications.  To prevent serious GVHD flares, drugs suppress Dan's immune system from attacking his donor so that the two of them get along in the sandbox and the sand stays on the ground.  A potential draw-back of this suppression is that something called graft-versus-leukemia effect is also suppressed in turn.  Part of Dan's graft/donor's job is to look around in Dan's blood and eat/attack/get rid of any cells that don't look normal.  Her cells are normal, Dan's are not, that's the whole point of all this.  That's graft-versus-leukemia effect, a good thing, normal donor cells eating abnormal leukemia cells.  The post-transplant care really consists a lot of doctors walking a tight rope prescribing enough immunosuppression to keep GVHD at bay while also allowing graft-versus-leukemia effect to take place.

Now that that's out of the way, here is the plan.  Dan will stop taking some of his immunosuppression medication for the next four weeks.  We will closely monitor for GVHD symptoms as this medication change gives the donor/graft free reigns to fill buckets with sand and throw like wild.  We hope that her cells enjoy a tasty feast of leukemia cells and that not one tiny ALL crumb is left.  We hope that GVHD is manageable and that Dan handles the medication change okay.   We pray that in 4 weeks, we all breathe a ridiculously huge sigh of relief, hug each other, cry together, and celebrate 100% cancer-free.

I can't believe I'm writing this kind of blog again, and I'm deeply saddened to share this news.  Yes, we've been in graver situations, and yes, we can do this.  We'll continue to find little joys.  We'll continue to cherish every second with each other and say I love you a hundred times a day.  We'll keep praying for health, for a cure, and for courage.  We'll try not to think of what might happen in the future and we'll see each moment for the beauty that it holds.  I know we'll get through this.  And I know we'll do it with hope, and strength, and in love.  I know we'll draw from your prayers, from your cards, emails and texts.  We'll feel the love from near and far.  We'll do this all like we have been for almost four years.  We'll do it because we have to, not because we want to, or because we're good at it.  We have no choice.  This is happening and cancer came back.  Again.    

I am off work today and plan to spend it with Danny enjoying the sunshine and his company.  He's been feeling great lately so we've been doing more and more "normal" things.  We'll fill the next four weeks with "normal" things and not wish any time away.  When the next biopsy approaches, we'll worry again.  But not until then.  We'll begin this new plan and we'll get on with our lives.  Please say prayers that we stay strong, that we don't lose faith, that the cancer disappears, and that ALL will be well.

Day 150 - Carry On

On this Holy Week in our faith and the one year anniversary of leukemia's return, we remember the day that changed our lives.  We vividly recall the minute details from the day that set us on the spiritual journey of a lifetime - a journey filled with fear, sickness, pain, suffering, hope, humility, and love.  We have faced our fears, we have challenged our faith, and we have grown stronger because of it.  We aren't there yet and the road is long, but we know the value of one day at a time and are beginning to see a future filled with health and happiness - and it looks great.    

It was just like any other Tuesday.  I had slept in a bit and was getting ready to head to George Washington University later that afternoon for class.  The phone rang and I answered - little did I know it would change everything from that point forward.  Dr. Broome was on the other line and I immediately heard in the tone of her voice that something was up.  She usually didn't call me in the middle of the day like this and she just sounded serious.  She told me to sit down and to prepare myself for what she was about to say.  Dr. Broome was more than just a physician to us; she had become a friend and a trusted partner on this cancer journey so I felt the pain in her voice as she said, "It's back".  We were both silent for what seemed like an eternity until I started crying and decided not to hold it back.  In her loving and almost motherly way, she explained how sorry she was and how important it was to act quickly on this and that we should start with aggressive chemo the following week.  After assuring her that I was going to be okay, we hung up and I sat on the floor for 10 or 15 minutes (but it could have been an hour for all I knew) in a state of shock.  I wasn't crying anymore but I just felt like I was living somebody else's life.  This could not be happening.....again.  I snapped out of it and knew I needed Hanna with me.  I needed to cry with her, talk this out, and just hold her.  I picked up the phone and called her at work, something I had never done before. 

"Hello?" What I heard on the other line was a voice I'll never forget, an unintelligible voice saying words like leukemia, relapse, chemo, transplant, right away  through sniffles and tears.  Dan asked me to come home right away.  I dismissed my 6th grade social skills lunch group and carefully explained "speech class is over early today" - a particularly difficult concept for my group of students with autism who thrive on routine (a regular, 30 minute session) and who have significant difficulty recognizing social cues (aka your speech teacher hyperventilating).  I pulled it together and my SLP friend, Kelly, escorted the students from our therapy session, allowing me a moment of privacy.  The next few minutes were a blur of emails to my principal and frantic packing of my things while I slowly processed what I had heard.  I raced to my car and immediately called my family, one by one.  Everyone's response was the same, a bit of silence, a few "I'm sorry"s, some tears, a lot of "oh no"s and always "I love you".  I can't remember parking and I don't know how I made it up the 4 flights of stairs to our apartment so quickly, but I'll never forget the look on Dan's face when I walked in the door.  We immediately broke down into a terribly painful fit of tears.  We held each other and soaked our shirts saying "it's okay" over and over, when we really knew that was a lie.  None of this was okay.

It is hard to imagine these events happened one year ago.  So much has happened since then but those moments may as well have been yesterday.  The year that followed has been scattered with high peaks and deep valleys but we scaled them all holding hands, trusting in God, believing in our medical teams (we had many!), and finding joy in every day, even when it seemed impossible.  We finished that night picking each other up, putting our faith and trust in the future, and going out for Mexican dinner.  It might seem like an odd choice of activities but it just felt right at the time.  It was our first jab at stupid cancer and its attempt to ruin our days and get in the way of our lives and precious time together.  I spent last year's Holy Week in the hospital getting chemo and living some small sliver of the suffering of Christ.  This year we are still jumping through medical hoops and living every day with the looming fear of cancer returning, but we are focusing on thanksgiving for being home to celebrate another Easter, for surviving another year, for our doctors, friends, and family, for our marriage which has only been strengthened, and for our faith, which is deeper and fuller and gives us the joy to live every second of every day to its fullest.

Happy Easter and always believe that ALL Will be Well

"We are shining stars, we are invincible, we are who we are.  On our darkest day, when we're miles away, sun will come, we will find our way home"

"Life is a storm ...You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes."

MARCH 2012

Celebrating our 2nd wedding anniversary a little early

in Annapolis, MD before Dan started chemo last year.

Looking forward to a cancer-free 3rd anniversary in 2 weeks!

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!