525,600 Minutes

“525,600 minutes, 525,000 moments so dear. 525,600 minutes – how do you measure, measure a year? In daylights, in sunsets, in midnights, in cups of coffee. In inches, in miles, in laughter, in strife. In 525,600 minutes – how do you measure a year in the life? How about love? How about love? How about love? Measure in love. Seasons of love.”

If any musical celebrates life and love more than Rent, I’ve never seen it. One of our earliest posts was entitled Viva La Vie Boheme; taken from that show… another song with the wonderful line, as they raise their glasses to toast “people living with, living with, living with – Not dying from disease!”

Our introduction to this show was when we attended a concert at the High School where our oldest son was performing with the Ensemble Singers. Their rendition of the music from Rent would not be done justice if it were categorized as a mere medley of songs from the musical. Rather, it was an abridged, concert version of the libretto that earned them competition honors. We were so moved by their performance that Rich and I purchased tickets to see it on Broadway and have been hooked on it ever since.

525,600 minutes. A year in the life.

On August 27, 2015 we celebrated Rich’s one year stem cell birthday. 525,600 minutes. Our day was filled with scheduled tests and doctor’s appointments. It was time to take note of our journey to date.

We continue to search for resolution to the balance issues and the last of that testing was done on Thursday. Rich was strapped into a harness and put into a machine that was built to test NASA astronauts on their return from zero-G in space. The walls and floor could and did move in a series of exercises created to determine which of the three necessary components of balance were deficient… Ocular, Vestibular and what is known as Somatosensory. A computer captured his movements as well as his level of resistance to each situation. He’d already had a vertigo test, EEG, MRI, IAC and a sprinkling of others unnamed. This one was to pinpoint the offenders… what was it, out of those components, that was making his balance so off. The muscles in his eyes or the inner ear functions were guilty? Or, was it the somatosensory aspect… his skin, muscles and joints? Neuropathy? Previous tests showed that there was a slight abnormality in the vestibular… those pesky wandering crystals, but not enough to warrant his symptoms. And his vertigo is not the dizziness that you would usually find. Instead of the room spinning, he just falls backwards.

Our doctor of physical therapy felt it was a chemo related issue more than the otoconia… the loose rocks rattling in his head. Hence the NASA booth. On our printout of the data, the chart showed SOM (somatosensory), VIS (vision or ocular), VES (Vestibular), and PREF which we find out is the visual preference, does he get visually confused? Thankfully, nope. There is some VIS loss which indicates that his eye muscles are a little tired but otherwise, just slightly below the norm; simple exercises will help that. SOM scores hit in the red zone but only slightly. This shows that his neuropathy is problematic to a degree. But other analysis shows that he has good adaptive behavior, when that sequence is repeated, his scores rise… that will come in handy. Naturally, he tanks on the vestibular, having four falls out of six when that function is tested. Unfortunately, there is little directly to fix this since it’s from his chemical bombardment to his system, but here’s where our guy has his strength… adaptability. With therapy, he can be taught to get muscle memory for situations that would make him fall and instead substitute corrective behaviors. We’re ready… These technicolor bruises need to be a thing of the past!

Next we’re off to see the pulmonary doctor. At this point, we’ve gotten through the worst of the prednisone withdrawals and, with the two nebulizer therapies daily, breath sounds are clear. The plan going forward is no longer 5 mg reduction every five days, now we slow it down to minimize withdrawal and let his body and his adrenals recover from this steroid bombardment and to allow his lungs time to recover with support. We look to be on prednisone until at least the end of October but the good news is that the bloating and moon face that is so uncomfortable, and doubles the amount of face shaving necessary, will begin to go away. We’re told the 10mg dose Rich has now reached is the demarcation line… having gotten to this milestone, positive changes should be in the works!

The good news continues as we visit our stem cell guru. She is thrilled with the progress at this point. She admits to and apologizes for the long road we’ve had to take to get to this here, but rejoices with us that we’re ARE here… hugs abound! Childhood vaccinations which need to be readministered are on hold until prednisone is off the meds list. Which means acyclovir, one of our banes, is still in our lives. This is one that makes Rich feel off after he takes it and the effect builds with each dose during the day. We’ve moved the midday dose into the 6pm realm to give him some better quality of life, but then his evenings are… meh. It’s like suddenly falling into a dark hole. Sometimes literally as it is one that adds to the balance issues. Enough with the falling! And our guru listens. She approves eliminating that mid-day-turned-evening dose. The worst of the day will be while he’s sleeping. More hugs!

We took time between appointments to stop into the treatment center for a port flush and bloodwork so we’re on our way after a ton of smiles and hugs for all. Our patient is tired. It’s been a long and eventful day.

But it is a birthday… we need to celebrate the passing of those 525,600 minutes. We wait for Nick to get home and then head out with mom as well for a sushi extravaganza. A good way to end the day.

As our son sang those many years ago, “It’s time now, to sing out/ Though the story never ends/ Let’s celebrate /Remember a year in the life of friends”

Those 525,600 minutes have not always been bright for us, but with the support of all of you, our friends and family, it’s been made easier. You have lifted us up and kept us on our feet when it seemed too difficult. Words fail to express how important your encouragement, your prayers and thoughts, your simple act of checking in, has helped us when we’ve needed it most. Nothing sufficient to tell you all how grateful we are that you are with us. You fill our hearts with love and refresh our spirit. We are humbled. Thank you.

As those young voices sang to us in that High School auditorium, “…Forget regret, or life is yours to miss. No other road. No other way. No day but today… There’s only now, there’s only here. Give into love, or live in fear. No other course, no other way. No day but today. “

Make every minute count. And CELEBRATE each one!