Sunday, November 24, 2013

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



Thursday, November 14, 2013

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