Author: usewhatexists

 

Albert Einstein is quoted as saying “Not everything that counts can be counted. Not everything that can be counted counts.”

True enough Al, true enough. But sometimes playing the numbers game can be an interesting exercise. And, while we wait for the new season of Walking Dead to start, why not tally up some of the experiences to date and see where our scorecard stands.

Current day post-transplant= 46

Current day since first doctor appointment=229

Lowest white blood count=0.01k/uL

Current white blood count=5.5k/uL

Current red blood count=3.45m/uL

Number of medications to date=71

Number of units of red blood transfused=15

Number of Neulasta/Neupagen injections=23

Number of platelet transfusions=5

Number of litres of blood processed for harvesting over two days=12

Number of litres of blood in the human body=5

Number of grams of stem cells harvested over two days=8

Number of blood tests=58

Number of chemo cycles=6

Number of days to engraft=8

Number of days in the hospital for transplant=28

Weight swing=34lbs

Highest temp=105.3

Number of Acupuncture sessions=32

Number of ports installed = 2

Number of ports removed =1

Number of heart function tests=12

Number of months to be on “anti” meds=6

Height of medical file at Monter=4 inches

Number of medical business cards received=30

Claims submitted to insurance since February=$1.2million

Answer to the Ultimate Question of Life, the Universe, and Everything=42

But as someone once said, “life is not measured by the number of breaths we take, but by the moments that take our breath away.” Yep, priceless.

While still one month away, Movember, yes Movember, will be upon us before we know it. Movember, that time of year when men grow ‘staches to support research and awareness of men’s health issues.

Can he do it? Can Rich grow a Mo for this Movember? He very well might! As we passed Rich’s first milestone of one month following his rebirthday on the 27th, we found new signs of healing. His upper lip is now sprouting, puberty-like, signs of facial hair. The fuzz on his head is now thickening and starting to increase in number. The loss of hair is generally the outward identifier of a cancer patient. Whether it affects you emotionally or not, the return of hair growth is an outward signifier of the body returning to its former self and that is sure to be celebrated. And just in time… the autumn days are getting cooler.

He’s also graduated from the three porch steps to the staircase in the house. Five steps up and five steps down are the current goals each day. The full flight of stairs is yet to come. Energy and stamina are the two gifts of health that take the longest to return.

That and a fully functioning immune system. We’re still in the careful stages of this process. Infections are the bane of the immuno-deprived…. To be avoided at all costs. We’ve brought one and only one plant down into our kitchen. We could not resist the flowering orchid that began to bloom before we went into the hospital and still continues to spread its blossoms for our delight. We’ve tucked it into the far reaches of our garden window where there is little chance that Rich will come in contact with it other than to enjoy the display.

Certain food, activities and anything that has the potential to cause injury or infection are all still on the no-go list. Each visit, we ask if any restrictions can be lifted but in the grand scheme of things, it is early days yet.

The last side effect that we can’t seem to kick is the digestive/intestinal upset. We still rely on some effective drugs to keep that all at bay. Whether the culprit is the massive doses of meds that keep the germs at bay or the remnants of the process itself is unknown. We’re just thankful that there are counter measures in our arsenal to combat the discomfort. We walk a fine line between what is the “norm” in this regard and what needs a doctor’s attention. So far, we’ve been able to stay on the home side of the line.

We keep our hopes up for an uneventful recovery. With one exception…. it is not too early to begin the prep for Movember…. How far along will Rich’s ‘stache be? Only time will tell. We’ve got the upper lip comb and the wax at the ready, Mr. Franklin, we are prepared. Here come da fuzz!

 

My mother-in-law loved butterflies. She always had any number of shirts with butterflies on them. Once she told me how she loved the transformative symbolism of their life cycle. How something so plain could turn into something so, as she would pronounce it in her Queens accent “beeyoooteeeful!”

Does the caterpillar have difficulty with these changes? Does it accept the metamorphosis with grace? Does it have faith that the transformation will go as planned? That, upon going into the chrysalis, it will emerge as a lovely monarch? Perhaps these are the lessons of acceptance, grace and faith that we have to learn from these visitors to our garden. This time of year is when the monarchs are finding their way back south to Mexico. They stop by our pond to drink and feed at the fading blooms so their lessons are visible to us.

The nurses had teased Rich about being swaddled in blankets while there… that he was in his cocoon ready to emerge as a butterfly. We emerged from our cocoon of the NSUH BMT Unit one week ago today. We‘ve transformed our reality. A butterfly can’t go back into its cocoon so it is always, for us, necessary to keep moving forward into this new reality.

In some ways, the pre-transplant chemo cycles have prepared Rich for the fatigue, off flavors, and other side effects of the transplant. In reading other people’s blogs on what to expect, this comes as a relief… it seems it’s more of a shock if you go into the transplant without previous therapies. It is not so different from what we had experienced before so lives in the familiar realm. The biggest difference comes from a month of minimal exercise. The three stairs up to our front door first left Rich’s legs like jelly. Now, as he walks twenty minute laps again and again throughout the day, taking the few steps down into the porch and back up again, the jelly is going away.

Kepivance, a medication given before and after the transplant to help keep mouth sores away, has done its job but coats the taste buds. Eating strong flavors is preferred as they cut through the I-haven’t-brushed-my-teeth feeling. Little by little, hunger is coming back. Our new reality is becoming remarkably like our old.

Our meeting with our stem cell team this past week has shown that Rich’s counts are on a constant rise and no transfusions or infusions or injections are needed. Weekly meetings will, as time go by, change to twice then once a month. Restrictions will, little by little, fall by the wayside. For now they remain. But we welcome our friends and family who visit and rejoice in taking an occasional trip outside.

We’re still in the full restriction phase but after the hospital, it’s not as restrictive as you would imagine. Rich’s activity level matches his energy level… as long as that balance stays, boredom will not come knocking.

After a butterfly emerges from his chrysalis, there is a period of time where its wings are soft and folded from being in the cocoon. It rests from its work and then, when it is ready, it pumps blood into its wings which gives them strength so it can fly. That’s the part of the metamorphosis we’re in now… wings waiting for their strength. Soon enough…. Within seventy-five days, Rich will be able to spread his wings.

Antoine de Saint-Expuery’s Little Prince said “Well, I must endure the presence of a few caterpillars if I wish to become acquainted with the butterflies.” We’ve endured the catepillars… now we wait to fly.

Sunday, day eighteen post-transplant is the day we go home. September 14th. Exactly four weeks since we first entered the double doors into the little hall with the little rooms, Rich exits North Shore University Hospital and gets in the car to go home. We will miss the nurses and aides who have taken such good care of us physically and emotionally.But it’s time.

As we drive home, Rich opens the car window to feel a breeze. We tease that he’s letting his hair blow in the wind. For the first time in a month, he’s seeing new sights.

We get home and he stands in front of the house. Emotions play across his face. Home.

We stand for a moment and take it in. He looks up and down our street. Home.

Slowly he makes his way up our walk. Three steps up to our door. Those three steps use muscles he hasn’t used since August 18th. All his walks have been on level floors.

The house smells of cooking. The boys have been working all weekend to prepare and freeze meals in single serving sizes. Every surface in the kitchen is taken up with culinary tools and ingredients.

After a month of sensory deprivation, it’s overwhelming. The sounds of the house and the neighborhood, the smells, the sights… the sheer volume of space in our small home. The freedom to move about, unimpeded by tubes and hospital schedules. Most of all, to give and get a hug. Tears flow. It’s been a long journey. There’s still more to go but it’s time to take in the moments and the distance we’ve travelled. We revel in our progress. It’s a joyous homecoming.

Rich settles into his recliner in the living room, tasting bites of all the different dishes, enjoying the variety. He’s tired but content. We set up the medications… they’ve all changed since we left home… there’s a whole new protocol.

We call and wish our son-in-law a happy birthday, the four of us together singing and laughing with the rest of our family on the other end of the phone line. So many things to celebrate.

Richard heads back home… a long drive ahead of him. Rich follows us all outside as we ring our bell to see our peripatetic son off. Three steps down, three steps back up. His legs are tired.

Neighbors stop by. Nick finishes the seemingly endless packaging of food. We clean the kitchen to the doctor’s specifications. Our One of Nine is back in his recliner.

We start to get used to the new reality. Tomorrow a visiting nurse will come in the morning. We have follow-up appointments and blood-work in the coming days.

It’s both comfortable and foreign to settle into bed for the night. But it’s something we could get very used to.

Home.

“And then the men go marching out into the fray Conquering the enemy and carrying the day Hark! The blood is pounding in our ears Jubilation! We can hear a grateful nation’s cheers!”

Rich and I began dating in High School. Maybe it’s because we began as a couple during rehearsals for the musical Camelot, but music and musicals and theater have always been amongst our greatest joys. Shortly before his diagnosis, my birthday gift was a wonderful day in the city where we had a terrific dinner and saw Pippin. It had been over thirty years ago when we had seen it on Broadway. What a thrill to see the new revival!

Yesterday, the lines above kept running through my head. As I sat in my germ free head-to- toe condom in our room, I got the message… it’s time to fight this out. It’s time to carry the day.

As Rich’s temperature continued to hover under and over the fever mark, his spirits were steadily dipping. It was time to go home but the magic number on the thermometer eluded us.

Every time his temp spiked… and by spiked, we mean 100.4…. another batch of cultures was done. All came back negative.

We argued with the doctors on rounds. If we were home, the protocol would be to take two Tylenol, take a temp reading periodically, and go to the ER if the temp while on Tylenol remained at 100.5 for twenty minutes. We haven’t met that criterion in four days. And yet here we remain.

A poor resident from Infectious Diseases came to evaluate Rich. This earnest young man thought we’d be here at least another five days. Right. He laid out a course of tests that would be his suggestion. Right. We explained that that would not be happening. All the tests, including the CAT scan came back negative. Rich is on every anti-medication that they can throw at him. If it’s a bacterium, fungus, virus, he’s on a med to fight it.

The truth of the matter is, with stem cell transplants, sometimes you just get a temperature. No reason, you just do.

Next our stem cell doctor came by. We explained our feelings on being here any longer than absolutely necessary. And she agreed, sometimes there just is a fever. No reason. It just is. She said we’d be out by Monday. We asked her for Sunday. It’s a small difference but in our world, it’s time. She agreed. We explained that the cultures continue to be done. She said they would stop. With Rich’s triple lumen out and his last day of neupagen earlier in the week, he’s got most of the pre-discharge prep done.

As she left, we heard her tell the nurses to take him off the IV antibiotic and start on oral meds. She said the doctor on call for the weekend would be told we’re going home on Sunday. She said it was time we went home.

This is, again, the reason why we are with the medical team we are with. They listen. We’re not just the NHL SCT in room M715.

A radiology tech stops in the room to do a chest x-ray. We refuse. Rich had one two days ago. She tries to convince us but we refuse. A nurse comes in and takes Rich’s temp. 101 in one ear, 100.5 in the other. Oral temp… 99.7 We insist she use that.

The night nurse, an angel in scrubs, looks over the blood counts and compares it to the dates/times of the fever spikes. The spikes in temp coincide with the extreme increase in blood counts. It’s Rich’s body taking exception to these changes going on.

Today the on call doctor came around. Afterwards, we’re not sure he gets it. So, as I’m home now prepping the last bits for Rich to walk through our front door tomorrow, Rich is asking for a meeting with the on call doctor again. To make sure he understands… we’re leaving on Sunday, September 14th. I hope the doctor is prepared. Because we are.

As Pippin sings….

“Everything has its season Everything has its time Show me a reason and I’ll soon show you a rhyme Cats fit on the windowsill Children fit in the snow Why do I feel I don’t fit in anywhere I go?

Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky

Every man has his daydreams Every man has his goal People like the way dreams have Of sticking to the soul Thunderclouds have their lightning Nightingales have their song And don’t you see I want my life to be Something more than long….

Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky

So many men seem destined To settle for something small But I won’t rest until I know I’ll have it all So don’t ask where I’m going Just listen when I’m gone And far away you’ll hear me singing Softly to the dawn:

Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky”

In the seventies, under a black light, posters everywhere had snippets of the Max Ehrmann poem… mine did. “… no doubt the universe is unfolding as it should. “

Similarly, in the Bible, Isaiah 55:8 reads “For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.”

The Sufi poet Rumi wrote “Fihi Ma Fihi” , in Persian literally meaning “It Is What It Is”

The Beatles sang “Let it Be”

Acceptance. It’s all about acceptance. As Rich’s fever hovers back and forth over and under the magic number for discharge yesterday, we could feel the frustration growing.

There is a negativity to letting this frustration take hold. We need to change course before it can attach itself too firmly. We may not understand the why of Rich’s fevers but we can choose how we deal with them and how they affect us.

Lao-Tzu said, “Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.”

OK Lao, challenge accepted…. We’re going to find our equilibrium today and allow the universe to unfold as it should, let it be, acknowledge that our ways are not in control here and accept it is what it is.

We started the day with stomach pain, lack of appetite, queasiness, general malaise and…. fever. The cultures have all come back negative so the doctors decide to take a swab culture to look for viruses. As we’ve said before, there are so many things you do without questioning the need when you begin a journey like this. So when the nurse hands you a rather long Q-tip and instructs you to shove it up your nose into your sinuses and swab away, you do. Even when the box of cotton swabs admonishes you to never ever stick it in any orifices, you do because the nurse said to.

Until the results come back, and since there were no bacterium detected in any of the cultures, they assume a virus. Which means masks are now to be worn by all who enter our Amtrak cabin. I’m now encased in materials that are guaranteed to hold in all moisture. With diaper rash already developed on my hands from the constant wearing of gloves, I shudder to think of what a 24/7 mask will do. Zinc oxide on your face is socially acceptable on the beach. Not in the supermarket. I now spend my days and nights in what feels like a giant condom.

After some meds in the morning to manage the early discomforts, Rich takes a long nap and wakes refreshed. His temperature still plays around the cut-off point. Our discharge clock is reset again and again. But he eats a light meal, showers and takes a couple of laps up and down the hallway. Dinner is another success. We play a few games of Mancala before discussing the nighttime medication plan.

It is good to see his color come back, his eyes bright and his sense of humor as horrible as ever. I groan at his jokes but rejoice at the return of that spark.

We settle in for the night, hand in gloved hand and looking forward to a fever free tomorrow. If not, we’ll accept another day in our little room in the little hall.

Rich’s mom had a small plaque in her home with her favorite, the Serenity Prayer: ′′God grant us the serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference.′′

We decide to lean towards one of our favorite authors, Kurt Vonnegut: “Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning do to do afterward.”

Let the merriment begin!

Each year with the scouts, we take a ten mile hike through Manhattan… winding our way from outside of Central Park down and around to Chinatown. We head back to Penn Station from the subway stop at Ground Zero. Today is September 11th. And so we remember.

Always we make our way to the NY Public Library. There sit two stalwart guardians, the library lions, Patience and Fortitude. Two good qualities to remember today.

We thought we’d be waking up in our own home this morning. Wistfully, I sit in the recliner that doubles as my bed at night. The soft beeps of hospital equipment mark the change of nursing shifts. Home. Not yet. But soon.

We can’t help but be grateful that Rich’s temperature has come down.

101.5

Although still febrile, the four degree drop is welcome. Our going-home clock is still on hold. If his fever were to break right now, we could be home on Saturday. The odds of that are slim. Our nurse tells us that a temperature of 105 does not remediate as quickly as it came. This will take time. Not yet. But soon.

Rich feels stomach pain where the ulceration had been at the beginning of our journey. We wonder if this has any bearing on the current situation.

A question to ask the doctors on rounds today.

We also wait for the cultures to come back… Not yet. But soon.

Will there be an answer or is this just one of those fevers that come with the process?

Today is a day full of questions.

Perhaps it will be one of answers as well.

If not yet, then soon!

Patience and Fortitude. Our companions today.

This morning’s slight fever lay dormant throughout the day. I sat and worked while he rested. The temperature changed the plans for tomorrow’s discharge. A patient must be forty-eight hours without a temperature in order to go home. If all goes well, Thursday is the new day of departure.

The doctor decides that his triple lumen catheter needs to be removed. It might be the cause of the fever. They replaced it a few days ago and his skin has been irritated since. They access his power port and remove the incredibly long catheter. He’s resting comfortably.

I left the hospital to get the house prepped for the cleaning crew who will disinfect it from top to bottom. After a few hours at home, I return to the hospital.

In Rich’s room I find Fire and Ice.

Ice and Fire.

Rich has a temperature of 105.

He shivers with cold.

They have him lying on a cooling bed to help bring the temperature down.

His skin is bright red.

He’s on fire.

Cold compresses.

Antibiotics.

The saline to hydrate him drips.

We wait.

And I watch.

There is nothing else to do but wait and watch and pray.

This will be a long night.

The roller coaster of this journey continues.

I’m grateful we are here, now, with the support of the nurses and doctors at hand.

This will be a long night.

A very long night.

Fire and Ice

If this were a weather pattern, there would be a helluva storm brewing.

Another day, another destiny

Tomorrow is the day…. Day 14 post-transplant and One of Nine is sprung from his Amtrak cabin. Wednesday, September 10, 2014 we will be going home.

Tomorrow we’ll discover What our God in Heaven has in store One more dawn One more day One day more!

Retraction….

September 9, 2014, 12:55 PM

OK, as soon as I post Wednesday, One of Nine spikes a temp. Goal is to be without fever for 48 hours and he’s broken that rule. Thursday is now our new date… Two days more? Did they sing that in Les Mis? I gotta update that dry erase board.