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.