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.