Sunday, October 20, 2013

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

Sunday, October 6, 2013

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.