Author: usewhatexists

Aragorn: Gentlemen, we do not stop ’til nightfall. Pippin: What about breakfast? Aragorn: You’ve already had it. Pippin: We’ve had one, yes. What about second breakfast? [Aragorn turns and walks off in disgust] Merry: I don’t think he knows about second breakfast, Pip. Pippin: What about elevenses? Luncheon? Afternoon tea? Dinner? Supper? He knows about them, doesn’t he? Merry: I wouldn’t count on it.

Tolkien’s hobbits knew a thing or two about food and drink. As he wrote about their journeys, he knew how food nourishes the body and the soul. How celebrations include a bountiful table. How ingrained its importance is in so many cultures.

As we look back over memorable moments with friends and family… holidays, vacations, milestones in life… the figurative breaking of bread and raising of a glass is most likely to have been a part of it. Whether around a campfire, at a ballpark, a kitchen table or the streets of the city, eating and the enjoyment of eating, whether trying new foods and tastes or setting a table for forty in our back garden, has been an integral part of our lives.

The last few days, because of an antibiotic change, a result of the chemo or just part of this process, Rich’s stomach has not been stable and for the first time since his first chemo infusion when the meds weren’t administered in the correct order, he was unable to keep food down. Thankfully that resolved itself but there is still a lack of appetite. With taste buds affected by the bombardment of medications over the last few weeks, this is not a surprise. Rich makes the effort each meal to get the nourishment he needs but he eats without pleasure and does not look forward to it.

Our room has a dry erase board that the nurses use to mark changes each day. There is a spot for goals where during chemo they would list the beneficial poisons for that day. Once that was done, we utilized that space ourselves. Each day we would put a goal and hope by the end of the day that goal was reached. Some, like the hiccups, took a little longer. We started with Happy Birthday on day zero. One by one, each goal erased and another taking its place.

Grow Cells! Get Engrafted! Get Rid of Hiccups! Get a Good Night’s Sleep! Walk 20 Laps! Settle Your Stomach! And now…. Get an Appetite!

The doctor would always look to see what goal we had for the day and put stars or hearts next to them in approval or to show when the blood work confirmed a goal reached.

We look forward to getting today’s goal off the board and change it to Go Home!

Pippin: What’s that? Merry: This, my friend, is a pint. Pippin: It comes in pints? [In low voice] Pippin: I’m getting one.

“You can’t stay in your corner of the Forest waiting for others to come to you. You have to go to them sometimes.”

While our intrepid patient continues to follow the daily regiment here in the hospital, suddenly our thoughts are thrust into the outside world. The doctor gave us the good news that Rich’s cells have engrafted as of yesterday, day eight, and that he can go home as early as this coming Wednesday… fourteen days post- transplant. It’s more likely to be Thursday or Friday but certainly much sooner than expected!

So much to do! So little time!!!

What a wonderful flurry of thoughts and planning and gratitude! In less than a week, our Poobah will be coming out of his corner of the Forest. The next part of our journey is about to begin… can’t wait!

“What I like doing best is Nothing.” “How do you do Nothing,” asked Pooh after he had wondered for a long time. “Well, it’s when people call out at you just as you’re going off to do it, ‘What are you going to do, Christopher Robin?’ and you say, ‘Oh, Nothing,’ and then you go and do it. It means just going along, listening to all the things you can’t hear, and not bothering.” “Oh!” said Pooh.”

And that was the plan. After a night of not much sleep, Rich was scheduling himself for a whole lotta nothing. It’s one week post-transplant and counts are low which brings an accompanying malaise. A good day for nothing.

And then there were doctor rounds and bullet points of results, procedures, treatments came at us with machine gun speed.

The CT scan of the day before showed the fluid that’s been in Rich’s lung improving but also brewing a little something. That’s the probable cause of the little fevers he gets that come and go. The antibiotics he’s been on are the ones of choice so there is no rush to change protocol.

The scan also showed that the triple lumen catheter in One of Nine’s neck has slightly shifted and isn’t in an optimum place. Maintenance will have to be done to shift it back to where it belongs.

Intestinal upset reared its ugly head again so more tests to make sure it’s not a particularly contagious virus called c-diff… thankfully the results are negative. But it does make for a busy morning.

Platelets are hung on the pole for infusion. A few meds to forestall any reaction are given as well. More of those to be given later as well since today becomes the day that Rituxin will be infused for the second time post-transplant. This is more as a maintenance measure like Tamoxifen is used with breast cancer.

Usually decadron is given with this which gives us pause… that’s one of the hiccup generators so we prefer not to deal with that. We’re grateful to find that the doctors have taken that into consideration and prescribe hydrocortisone instead which does not last as long in the body.

To keep the Rituxin from staying too long, a diuretic is prescribed. Which makes for a busy afternoon.

The doctors are pleased with the progress to date. All indicators are where they should be. Even the infection is considered par for the course.

We get word towards dinner that Interventional Radiology is rescheduling the triple lumen procedure for the next day. Reprieve.

But boy does this throw off the body clock! The Benedryl/Ativan combination that was administered throughout the day is strong and keeps Rich dozing for the bulk of the day in between everything. Not quite the nothing he intended and there are no walks up and down our little hallway outside our little room. After a day of medicine induced naps, the night finds Rich wide awake. Ambien is prescribed but to no avail. My recliner is pulled up next to his bed.

Late night turns to overnight turns to early morning.

Maybe today we’ll do nothing.

Piglet sidled up to Pooh from behind. “Pooh?” he whispered. “Yes, Piglet?” “Nothing,” said Piglet, taking Pooh’s hand. “I just wanted to be sure of you.”

“`Twas brillig, and the slithy toves Did gyre and gimble in the wabe: All mimsy were the borogoves, And the mome raths outgrabe.

Beware the Jabberwock, my son! The jaws that bite, the claws that catch! Beware the Jubjub bird, and shun The frumious Bandersnatch!”

He took his vorpal sword in hand: Long time the manxome foe he sought. So rested he by the Tumtum tree, And stood awhile in thought.

And, as in uffish thought he stood, The Jabberwock, with eyes of flame, Came whiffling through the tulgey wood, And burbled as it came!

One, two! One, two! And through and through The vorpal blade went snicker-snack! He left it dead, and with its head He went galumphing back.

‘And, has thou slain the Jabberwock? Come to my arms, my beamish boy! O frabjous day! Callooh! Callay!’ He chortled in his joy.

`Twas brillig, and the slithy toves Did gyre and gimble in the wabe; All mimsy were the borogoves, And the mome raths outgrabe.”

One of my favorite poems, the Jabberwocky from Through the Looking Glass is also by one of my favorite authors. When my cousin Diane said it was time to slay the hiccup dragon, there could be no other picture in my mind than the beast as drawn by John Tenniel in 1871. Our vorpal blade, lemons and Ativan, has gone snicker-snack. Knocking wood as I type, it’s been 24 hours since Rich and I tried a round the clock Ativan regimen. And, we tentatively report, it’s working!

We chortle in our joy.

It’s a little too soon to say they are really and truly gone…there is one more day of therapy this weekend where Rich will receive one of the hiccups culprits, Decadron. If so, then one, two, one, two, we’ll have to battle it through and through.

But for now, O frabjous day! Callooh! Callay! ‘Tis Brillig indeed!

“Fate is like a strange, unpopular restaurant filled with odd little waiters who bring you things you never asked for and don’t always like.” ― Lemony Snicket

Lemony Snicket. If you haven’t read his books, he’d be the first to tell you not to. We’ve met him and he did. Since we’re still on the lemon regimen, seemed like his morose and quirky brand of philosophy, along with his name, would be fitting after a night of little sleep.

The hiccups continue and Rich has been very concerned about the acidity of the lemons. For a day, he decided he was not going to use the lemon therapy. He tried a mix of anti- nausea medications to see if they would do the trick. Sadly, no. And the night was filled with the sounds of seals and whales and all manner of marine life. Sleep eluded us.

We try the Thorazine again and for two hours the sounds of the ocean deep recede. The problem comes when Rich wakes up very disoriented and tries to ‘unbutton’ the IV connections. This apparently is necessary in order to use the bathroom facilities as far as he’s concerned. For the next twenty minutes, Rich appears to be very amused by the rules I’m imposing upon him. He seems to be reliving his fraternity days (and nights) where sinks were multipurpose when it came to bodily functions. “Oops! Too late!” We figure later that this is probably due to a mix of meds but as the stem cell doctor tells us when we discuss it with her in the morning, even if the meds were all the same as at home, we’re in an unusual situation and the body reacts differently than it did before. She assures us that the ant-acid medication that he is receiving will forestall any mouth and digestive issues that might otherwise be a problem with the lemons.

A few times now Rich has had this nighttime disorientation… sometimes he remembers them and we trace back his confusion to whatever was on TV at the time. This one he doesn’t remember so I recount to him the mischief he was up to and the amusement he seemed to have with the whole situation as it was happening. So now we’re back to our lemony hiccup arsenal. We’re trying the Thorazine again as a solo act. I’ve got the Omega Sigma Psi paddle ready just in case.

We’re now at what we figure is close to the halfway point in this hospitalization. And halfway through the low blood counts. Which means we’re getting close to the next milestone. That will be when his bloodwork shows that the stem cells have engrafted which should be sometime in the coming week… the point where his white blood cell counts begin to rise. In the meantime, he’s received three units of red cells and two of platelets to date. These give him a great boost in energy the following day.

And he needs that energy. His days are full. There is a mouth regiment five times a day to forestall sores. There are the hourly breathing exercises. Twice a day laps up and down the little hallway outside our little room. Showering is a slow process as the IV’s need to be disconnected from his triple lumen catheter, flushed, and covered with a waterproof patch only to do the whole in reverse after. The entire shared bathroom is disinfected and draped, spa-like, with towels. Meals: deciding on meals, ordering meals, eating meals. Reciting his name and birthdate with all the meds administered. Daily rounds with the doctors… question after question after question. Vitals checked. Patient weighed. Catheter maintenance. IV’s, tons and tons of IV’s. His day fills up. And thankfully, the days pass quickly. Each day closer to our goals. The nights however… man o man are they ever long! Each side effect of this process is magnified in the overnight. We hook up the laptop to TV and watch Netflix selections. But then it is hard to nap during the day with all the interruptions since every.little.thing. is monitored. Everything.

Despite all this, the weekend has been wonderful. Our family all came down from Rochester and our hearts, as well as the hospital room, were full. Tho’ hugs are verboten, just having the time with each of the kids, Richard, Emily, Nick, Andy, Noelle and grankids Jake and Mark, was heaven. We treasured each and every moment with them all and now count the days, not only post- transplant but til we see them all again. Our goal is to join them all in Rochester for Thanksgiving. In the meantime, we spend our time looking at all the photos we took this weekend and look forward to more on Facebook as well as those messaged to us by our kids and especially those from LaValle Stephan as she babysits for the little ones during the week. We could not have asked for better partners in Grandparenting!

So, as this long holiday weekend, which went by way too quickly, comes to an end, we are once again alone together in our little room in the little hallway. But still surrounded by the love of family and friends.

As our author Lemony Snicket once wrote: “I will love you as a drawer loves a secret compartment, and as a secret compartment loves a secret, and as a secret loves to make a person gasp, and as a gasping person loves a glass of brandy to calm their nerves, and as a glass of brandy loves to shatter on the floor, and as a noise of glass shattering loves to make someone else gasp, and as someone else gasping loves a nearby desk to lean against, and if leaning against it presses a lever that loves to open a drawer and reveal a secret compartment. I will love you until all such compartments are discovered and opened, and until all the secrets have gone gasping into the world. I will love you until all the codes and hearts have been broken and until every anagram and egg has been unscrambled.”

Of course, he also wrote: “If you are allergic to a thing, it is best not to put that thing in your mouth, particularly if the thing is cats.”

So there is that.

“I want to roll my eyes right now, but the doctor says that if I keep doing it, my ocular muscles might spasm and eject my eyeballs.” —Liz Lemon

Oh, wait, was I supposed to quote “if life hands you lemons, make lemonade?”

I thought the whole Liz Lemon spasm quote was more apropos. I could be wrong.

“Hiccups lasting more than 48 hours are considered persistent. If they last longer than a month, they are termed intractable. The longest recorded bout of hiccups lasted 68 years.” We don’t intend on surpassing that goal… Guinness Book of World Records be damned.

You see, a change in position, a bit of conversation, eating a meal. All these things bring on the hiccups. The now painful and continual hiccups. There have been a number of frustrating conversations with the medical team. They don’t see what is happening. It’s all only anecdotal to them. Generally he is on the medication Ativan when they show up.

Today, this morning, they saw what we’ve seen. Rich’s entire belly in spasm. The hiccups making the seal and walrus sounds. Worst of all are the ones that are silent. Those… those close up his throat. He can’t breathe. The spasms continue, bed shakes, the pain in his eyes, and a panic begins to set in as the air can’t pass his closed glottis and epiglottis. Four, five, six spasms then a long gasping breath and the oxygen fills his lungs again.

I spoke with every nurse, every doctor every person I could get today. The frustration was overwhelming. They understood they said. They even saw. But nothing, nothing could get through to them the desperation we felt that this effect was not being addressed the way it needed to be. The night nurses, God bless them, know and feel for us. Understandably, their hands are tied to the doctor’s orders.

We make a decision on our own… we will stop the Thorazine. One thing you can count on with chemo, once a side effect begins, if you don’t nip it in the bud, it will go on and on and on. Unfortunately, the changes that were made to our successful home protocol once we got to the hospital started that problem on the wrong track. From now on, we will count on Ativan to counter the hiccups. It does make Rich sleep, but the sleep is healing. Other narcotics are now off the request list. We leave only one pain med as an option if the obliques are too strained.

The RN calls in a practical nurse. She listens to us and agrees with our course of action. I talk to her about a remedy I’ve read about on my never-ending internet searches… Meyer Lemons or Lemonade Fruit. Neither is readily at hand, but we do have regular lemons in the hospital. We have asked for them with dinner… fresh sliced.

At the first sign of hiccups, We follow the directions sprinkle sugar onto the slices and Rich eats the pulpy fruit. It quickly stops the spasms. The “dosage” is a recommended 1⁄4 to 1⁄2 a lemon. It works. Rich is able to converse for ten minutes without a hiccup. The only thing we need to worry about is the acid and its effect on his mucosa. Meyer lemons don’t have that same acidity. The hunt is on!

In the meantime, one of the orderlies is asked by the nurse to find some fresh cut lemons. He goes to the Au Bon Pain in the hospital, explains what he needs for a transplant patient and they wash and fresh cut half a dozen lemons and give them to him in a cup that was out of a new sealed package.

The care and courtesy of the night staff throughout the hospital touches us to the core. There is nothing we could do, no words we could say to thank and repay them for their service to us. Their understanding and compassion far exceeds their job description. At this writing, we began our new protocol about three hours ago. We’ve seen the success of it. Rich now quietly sleeps, his belly only rising and falling with his deep breathing. There are no spasms.

At this point, the only lemon/lemonade quotes here are “find me some Meyer lemons or some Lemonade fruit”… a quote I attribute to me.

But if you really need one more that you can find on the internet, let’s go with this one… “If reality TV has taught us anything, it’s that you can’t keep people with no shame down.” — Liz Lemon

Does that have anything to do with cancer? Nah, but without an ounce of shame, we refuse to stay down.

“I am he as you are he as you are me And we are all together”

Resting my feet on the frame of Rich’s bed, I can feel the shaking going on and on…. And on.

His hiccups, with a change of medication, have gotten worse. So very very very worse. Our barking seal morphed, due to clusters of hiccups, into a laughing seal. There was not enough air for a bark to form so the sounds, when they could come, were like a rough hahahahahahaha. At times, there is no sound at all. Air is not passing through his throat but his belly spasms and he’s helpless. He can’t catch his breath.

His voice, now raspy, has changed once more. After one long exhausting session of hiccupping, he turned to me and, with a gravely voice said “I Am the Walrus…. goo goo goo joob.” And he was right, Beatles reference notwithstanding, he sounds now like a walrus.

Our amusement with these hiccups has waned. We request to go back onto Thorazine; Baclofen is certainly not the answer. His oblique muscles require hot packs to try and relieve the pain. He’s back on Thorazine but more of a cocktail is needed to keep these at bay and we work throughout the night to find the answers. The nurse patiently runs through a variety of options. Rich once more has the cannulas in his nose for added oxygen, this time with some moisture added to soothe his throat. Added to our white noise of the air filtration in the room is now a burble of water. A Zen waterfall in a bottle on the wall. A bundle of narcotics are administered and he can rest for a short while. His blood pressure needs to be continually monitored with this group of meds. He nearly falls when getting up. It’s a fine line we walk to find comfort.

He runs a slight temperature. This is expected at this point in the journey as his blood counts drop. The routine of bloods, chest x-ray and vitals to find the cause is gone through. A practical nurse stops by to give a quick exam. It takes twenty-four hours to get the blood cultures back, but all indicators lead us to believe there is no infection brewing. With the prophylactic antibiotics he’s receiving on a rotating basis, it’s hard to believe anything could possibly take hold. As quickly as the temperature comes, it goes. He’s remarkably healthy. His humor continues. His strength of will is remarkable as well.

We had been nervous about the period of time when the counts drop. It’s been described as being like the worst case of the flu. While we’re not out of the woods yet with the possibility of those effects, but, with Rich’s health otherwise in good shape, we’re more concerned about these hiccups. Unless asleep, they just go on and on and along with them, the pain, the struggle to breathe, the exhaustion.

As Rich quotes John Lennon, I remember the source of his inspiration… Lewis Carroll’s Through the Looking Glass…

“The time has come,” the Walrus said, “To talk of many things: Of shoes–and ships–and sealing-wax– Of cabbages–and kings– And why the sea is boiling hot– And whether pigs have wings.”

Yep, it’s time to talk of many things. We await rounds when we can hopefully find a solution to this dilemma before all the oysters are gone.

I am the Eggman. Goo goo goo joob.

Everyone said the actual transplant is anticlimactic and they are correct. There are no big switches being pulled dramatically, no lightning, Rich’s bed, disappointingly, does not rise through the roof into the night skies. There is no Frau Blucher and any horses whinnying are on the Animal Planet station on cable. Igor is sadly absent.

But as Dr. Frederick Frankenstein said, “From that fateful day when stinking bits of slime first crawled from the sea and shouted to the cold stars, ‘I am man.’, our greatest dread has always been the knowledge of our mortality. But tonight, we shall hurl the gauntlet of science into the frightful face of death itself. Tonight, we shall ascend into the heavens. We shall mock the earthquake. We shall command the thunders, and penetrate into the very womb of impervious nature herself.”

There is that feeling of playing god with this process. Like the youngest of Frankensteins, we are recreating life from life. We breathe a sigh of relief that these cells don’t come from a guy called Abby Normal.

Normal.

For the most part, things are fairly normal. Other than when the night nurses, as they leave in the morning poke their head in your room and call out a Happy Birthday and wish you luck this feels like any other day.

The Patient Care Associate, what used to be called orderlies, encourages you to shower before the procedure. During that time, they clean and disinfect your room from top to bottom. Your sheets other bedding are changed.

You come from the spotless shower back to your spotless room. During rounds, the doctors, residents and interns all congratulate you on your progress. Your nurse administers the pre- meds… for nausea, headache, allergic reactions, for infections, for mouth sores… a shot glass of them followed by a few more infusions. The stage is set but it’s all still fairly standard stuff.

Suddenly there is a crowd in your room…. A gaggle of nurses first ask the required spelling of your name and date of birth. You are handed a Ziploc and within that bag is another, an IV bag, with liquid as red as blood. Everyone look on. This is your life in your hands… literally. Without these you will die… you are too immunosuppressed to sustain yourself. You have no more means of creating new stem cells and these stem cells have a job to do. They need to become the red cells, white cells and platelets. This is your body’s main goal in the coming days, weeks, months. Make more red blood cells… same for white, same for platelets. Without them, you have no chance of survival.

One nurse takes the bag from your hand and hangs it on your IV pole. Another hands you a small stuffed animal all decked out in party gear… press the tummy and it sings Happy Birthday, everyone joins in song. We all watch as the first drops drip from the bag into the tubing that ultimately connects to your triple lumen and into your artery. We’re on our way.

The doctor and nurses disperse. The translucent fluid slowly changes from the clear of the saline to the life-giving salmon color of the blood product that includes your stem cells. It feels like a singular moment in time when that color hits into the port and continues on its way. We’ve begun.

Your vitals are checked throughout the hour that it takes for the bag to empty. When it gets close to that point, the nurse squishes the bag to ensure that they will stay mixed and not a single stem cell will be left behind. Finally the last of the red fluid is gone from the bag. Quickly the nurse switches out the empty bag for one of saline. This will push the last of the valuable fluid in the line through to the port. We now watch the reverse of the beginning…. The translucent red fluid is now being replaced by clear. Once it reaches the port, the procedure is done.

You’re tired. The night before is full of interruptions for meds and vitals checks. Tonight promises to be more as they monitor your reactions… or lack thereof… to the transplant. When it is autologous as this one is, since these are your own cells, there’s very little reaction to be had. There is no Graft vs Host complication. But these same cells have been preserved with chemicals and frozen. They have been thawed and washed. Reactions can happen. They’ve given you meds to counter these but monitoring is necessary. You taste garlic in your mouth. They said that would happen. Dinner options will have to be chosen appropriately to complement this self-seasoning.

There are smiles during the day… gifts of laughter. Photos of our little ones. An absurd bouquet of balloons from our family of friends at work. You give in to the exhaustion and close your eyes. Your rest is long and deep. You’re only woken to take more post-transplant meds. You don’t quite feel yourself but a little “off” which is to be expected. For all the unremarkable effects of the day, it’s still been a very busy day for your body.

And that will hold true for the next few weeks and next few months. Outwardly there will seem to be not much going on, but in reality, your body is working overtime. Today was the first of three weeks of daily Neupogen injections. This lesser cousin of Neulasta will help build the necessary blood components to allow you to ultimately go home. Claritin is our companion once more. We find ourselves telling the nurses the benefits of the brand name version of Loratadine and they take note. We hope that word continues to get out that this is an important component of this treatment.

Meds now have changed from those that break you down to those that will build you up. There are side effects to these as well but manageable. Digestive tract disruptions are not severe but exist. We work on solutions. Since the week of chemo was an intense blast of beneficial poisons, the effects will not dissipate as quickly. The next ten days are supposed to be the point where counts are at their lowest… fevers, mouth sores, digestive upsets…. These are all expected but not guaranteed. Again, we hope to be outside the norm and dodge those bullets. After dinner, there is a sense of discomfort… something just not quite right. A muddle of side effects, nothing overt, but still there, combine to give a restlessness. Discussions on current meds, possible meds, timing of meds and a consensus of what to try is reached. They kick in and another night begins.

This is the first night of a new beginning. We are by no means at the end of our journey, but we’re closer to that goal each day.

Taffeta, Darling.

…Son Richard’s Post… Cancer sucks. There’s no two ways about it. It sucks. I don’t have it, and it still sucks. Brain tumors, prostates, breast, thyroid, skin… I’ve seen a lot of cancer in my family. Earlier, it had always been older people. You know, grandparents. I thought to myself, “well, that’s just how it is. The longer you’re around, the higher your chances are of getting some form of cancer.” I was a bit of a dick then. I still am, but I was then, too.

I’m in my 20’s and receive a kick in the nuts. Hard. Dad has Lymphoma. That was a lot to process, but we got through it with a heavy dose of fezzes… but that was then, when I was still in college and unable to travel. I did when I could, we got through it. It was odd for me, the bulletproof man with a chink in the armor. Every kid looks at their Dad and knows that they’re Superman, but they never expect Lex Luthor is hiding in their system with a chunk of Kryptonite, waiting to jump out like Doakes after he finds out about Dexter being the Bay Harbor Butcher.

Ten years goes by pretty quickly.

My sister had a kid and got married. Then had another kid. My brother graduated High School and got accepted to the college I wanted to go to, but wasn’t smart enough to get in. I got a job, bought a house and got engaged. Despite all this, Lex Luthor waxed his scalp again, and in the past ten years had been moonlighting as a place kicker for the NFL. Ten years after the fact, he started from ten yards back, wound up and kicked the boys way up to my throat. Cancer 2: Electric Boogaloo. I thought to myself, we did it once, we can do it again.

After my wedding, honeymoon and settling into married life (which, by the way, is exactly the same as unmarried life), I had this nagging feeling that I wasn’t able to fully understand what was going on with Dad. I didn’t really understand what was going on the first time we went through this. Talking on the phone only goes so far. Parents are programmed to protect their progeny. Mom and Dad are doing just that, and I can’t blame them for it. I always wanted to know the details, the day to day challenges, the ups and downs. But no matter what answer I got I knew there was something missing. Everything felt too filtered, too clean, too… boring. Then, when this whole stem cell process was dumped on my folks, my Mom actually called me and told me everything. It was raw. It was… horrible. Incomprehensibly terrifying. I digested what I could and cried out the rest.

I felt an overwhelming amount of guilt that I wasn’t there for all of this. I felt sick to my stomach. Talking to my Dad on the phone during treatment was (and is) always difficult, but every little bit helps. Mainly because he sounded like he just chained a few Naragansetts like Quint aboard the Orca, meanwhile I’m left crushing my styrofoam cup. All the killer chemo drugs, coupled with the additional drugs that try and counteract some of the side effects of the poison they’re dumping in your body, seems to make people a bit out of it. It reminds me a bit of my Poppop and his dementia – never able to properly put the correct words in the correct order. I could hear this on the phone. Some days, consonants are difficult, sometimes, when the Benadryl is really kicking in, it’s hard to imagine that the voice on the other side of the phone is my Dad’s.

After one such call, I looked at my wife, Noelle, and said I need to go to the Island on weekends. I was scared. I still am, but I was then, too.

I spent last weekend here trying to stuff my Dad full of the things he’d be missing while in the hospital. Sushi, power tools, driving at excessive speeds on the parkway.

This weekend, we’re in the hospital. An ungodly amount of poison is administered by a rotating staff of genuinely nice people. The wing is a bit goofy. It’s a wing within a wing – a very belt & suspenders approach. There is a vestibule between the run of the mill cancer patients (hah!), and the insanely delicate cancer patients. Sanitize before you go through door one. Sanitize before you go through door two. Wash your hands. Sanitize. Put on your yellow disposable apron. Sanitize. Put on your gloves. Now you can go into the room. Don’t take your gloves off. Don’t take your apron off. When you leave the room, dispose of your apron and gloves. Immediately wash your hands. Sanitize, open, sanitize, open, sanitize. Like my Mom said to me: Plan your bathroom breaks accordingly.

The room itself isn’t the smallest room, but definitely not somewhere I’d want to be for a month. The entire room is positive pressure. A non-stop barrage of HEPA filtered air keeps everyone germ free. Plus side of this is that you can fart and just about instantly share it with the orderlies. Minus side is that it sounds like the inside of an airplane 24 hours a day, 7 days a week. For a month. The fan comes in two speeds: Loud and insanely loud. There’s a Murphy toilet, with the Bigger, Blacker Button to flush. There’s a cool Darth Vader looking panel on the wall that runs the room. It shows temperature, has controls for the privacy curtains, to adjust the blinds and to turn individual lights on and off. There’s call buttons, Jake’s day count (-4 at the time of writing), and a mini fridge stocked with bee—uh, leftovers and condiments.

My mom decorated the room in its usual fashion: pictures of family, places we’ve been, good memories, goals… as well as a reminder that Dad made it through this once before. It’s a picture of me in my graduation outfit: Fez, Doc Martens boots, gown, and my best dress. I was told in the invitation that I was to wear my best dress. I had one that I wore for a cross- dressing party in college, so on went the little black chenille number. It was comfortable. Sometimes what seems like a good idea in the moment comes back to bite you in the ass. And it makes you laugh. And that’s a good thing, because if we can’t laugh about how insane and absurd this process is, we’re fxcked.

First thing my Dad does is thank me for being here… I don’t know how really to react to that. I’m glad I can be here to help with the lifting. If the tables were turned, I know he’d be doing the same thing. I’m glad I can give my Mom a night off, although I know she’s not going to sleep well. For as much as she trusts me, I haven’t been here through the whole process. If something comes up, I have to guess what to do and what the best course of action is. If it doesn’t work, I pick up the phone. I know that right now, my Mom is waiting for the phone to ring.

Today was largely uneventful. Poison and godawful amounts of liquid in and nurses screaming for the amount of liquid out. Lunch, dinner and walks up and down the hallway. A little bit of Mancala, some nausea from the meds caused a small panic, but the drug regimen is there to fix what ails. I don’t know if sleeping half the day is normal, but that’s what Dad has been up to. Hopefully the rest of the night here goes the same. A little awake, a little asleep. Some light scolding to wake me up if he needs anything. It’s a funny full circle thing. Twenty or twenty five years ago, Dad would wake me up when I was sick at 2AM with antibiotics, cough medicine and two vanilla Hydrox cookies to wash it down. Here I am waking him up for drug o’clock at midnight.

You learn weird things about cable television while in a hospital. For instance, after ten hours Pawn Stars loops their episodes. Yep, we’ve been watching Pawn Stars for ten hours. You also learn that Sam Adams brewed over 60 different beers last year. You relearn this every commercial break. The most terrifying thing you learn is that Cellino & Barnes have made it out of the Western New York area and are slowly but surely taking over. You learn weird things about the people in hospitals. Everyone does their thing. The rest of the patients in the wing have that same look I see in my Dad’s eyes as they’re doing their hallway laps: Fuck Cancer. Behind all the exhaustion and exasperation, people are fighting with absolute determination, knowing that the care they are getting here is the best possible, that they’re riding the bleeding edge of science.

The night was restless. For me, at least. Dad got a lot of rest. Of course, I was peeking at him every time he stirred, not being able to go to sleep until about 2AM. I faded in and out of consciousness as nurses popped in and out to either take blood, administer more drugs, or to remind Dad that he needs to go to the bathroom lest his bladder be bathed in poison for too long. The last saline bag for a while came at 5AM. Today, there is a new drug cocktail that the doctors are prescribing. Along with that comes the anxiety, the fear of the unknown and the rule of threes, Liz Lemon. I’m hounding the doctors for the next dose of Xanax to keep the mind demons at bay. We’ll see what comes of it.

Exercise is important when you do nothing but heal, eat, sleep and eliminate. Dad was a champ yesterday with the exercise, but today is a little shakier. All the diuretics are working, too. He’s down a few pounds, a little closer to the weight he was when admitted a week ago.

So for now, everything is moving forward as planned. Don’t get me wrong, I’m still scared. And that’s fine because we’ve got people who are really, really good at their jobs to do the heavy lifting. Outside of that we’ve got friends and family and people who Dad has impacted all pitching in where they can. It’s the greatest “thank you” I can possibly think of. It’s a humbling experience to be here and experience what Dad’s going through.

My homework assignment was to write about my experience for Mom. I couldn’t really write about this without bringing everyone up to speed. Mom’s been writing these posts for months now. Everyone knows her voice and perspective. She writes poetic prose and chains a few metaphors to get the point across and make the story a little more digestible. I’m a little more literal, much fouler mouthed, and completely unable to string sentences together well enough to ensure people actually follow along with what I’m trying to get across. Plus, my grammar sucks and I tend to write with a touch too much misplaced brevity. That, plus excessive commas. If you have made it all the way through my incoherent ramblings, thank you for bearing with me.

TL;DR: Cancer still sucks. There’s no two ways about it.

Jeff Goldblum knows how to deliver a line with that stuttering arrogance of certainty. In a Jurassic Park movie, he delivers the above line in a glib way to newcomers to the abandoned park. He knows better than to be lured into the beauty of the danger around him. Gotta say, that’s certainly how it felt today.

We’ve established a good routine in our little room in the little hall. One of Nine’s latest prosthetic is healing nicely and very rarely do the looped stitches holding it in place pull. The quiet time in the overnight is when getting office work done is the easiest, although the days were settling in as well. It was very oooh, ahhh.

Then… then there was later.

Rich woke up and sat up with an odd and puzzled look on his face. His eyes closed and he began to moan through slightly open lips. Immediately I pushed the nurse call button and, hearing them in the hall, called for them to come in quickly. We all tried to determine what the problem was and were shooting questions at Rich to get him to respond. We finally got through to him and he said one simple word….“Pain.”

That started a whole ‘nother flurry of questions. He had pain in the lower sternum. Talking was difficult. His eyes were closed, his face tight and he had difficulty answering any questions. The moans were coming from deep within with every shallow breath. Asked to take a deep breath, he tries and the pain jumps. EKG ordered. Bloods taken. A portable chest X-Ray. Nasal cannulas deliver oxygen. Everyone tossing out ideas to the cause. Little by little, the pain recedes. Rich lays back, tired but comfortable. He’s able now to give us more insight into his side of this experience.

As the test results come back one by one, and causes are eliminated, it’s determined that the probable culprit is a chemo induced mucositis located in his esophagus. Many of the chemo drugs will irritate the lining of the entire digestive tract but most often presents in the mouth. The injections of Kepivance before admittance and the daily glutamine are supposed to help keep this at bay. We review the mouth care regimen and debate other courses of action. Most sources agree that it is all but unavoidable during the stem cell process. We’d prefer to be outside the norm.

Although exhausted, Rich returns to himself. We order a light lunch of clear broths, tea, jello. A very long nap follows.

During this time, a number of specialists and nurses from the unit stop in to discuss this recent development with me. It’s decided to continue on with the protocol as intended, step up the mouth care using sponge brushes and rinses, add in an anti-fungal and be vigilant. Finally, everyone disperses to attend to other patients. Alone, as Rich sleeps, I can’t help but ponder what could have been. If I’m at work and this happens, by the time I get to the hospital in the evening, it would be almost a non-event. I look at Rich now after we had dinner, played a few games of backgammon and walked some laps in the little hallway… there’s no sign of this morning’s events. Would that have been better? Would I have gotten the full story from the nurses, from Rich? If I did, is experiencing it in person “easier” in the long run than the imagination? Could I be blissfully ignorant? Would the nurses have heard his soft moans? How long would it have taken for someone to have come into his room to check on him since he was beyond being able to push the nurse call or raise his voice?

These are the difficult choices caregivers make… where to be when. I struggle with it every day. Finding the balance between work and cancer. Not knowing how long this journey will be and when we can feel out of the woods without looking behind to see if we’re being chased by raptors only to find one popping out of the bushes in front of us. I feel that we’re partners in this journey and it’s not one I’m comfortable having him experience alone. At night, when there is the quiet of the sleeping patients, I can keep up with my office work and continue to work on improving my spreadsheets. I need to be able to glance at my husband and see the peaceful look of sleep on his face. Watch his chest rise and fall with ease. Would I, could I, sleep at home and not know? I honestly doubt it. As the hours go by, I curl up in the recliner, gowned, rubber gloved hand on his arm and close my eyes too. As far as I’m concerned, that’s the way the universe, my universe, should be. Together. This is a terrible/terrifying journey. If I were in Rich’s place, if that switch were possible, I would want him there to hold my hand as we find our way.

We have some odd chemical companions on this journey, they have been what, in any other situation, we would do everything to avoid. But, as Dr Ian Malcom says in Jurrasic Park, “Life breaks free. Life expands to new territories. Painfully, perhaps even dangerously. But life finds a way.”

This is our way.

Together. Only way we know how. For life.

Let’s just try to do it without the running…and…and the screaming.