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

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