Tuesday, July 30, 2013

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

Thursday, July 18, 2013

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.

Monday, July 8, 2013

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.