Thursday, May 30, 2013

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.     


Wednesday, May 1, 2013

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.