Living in a Postscript

A week ago, we woke to the stone edged green patchwork that is the hills of Ireland. We were towards the end of our fifteen day stay; travelling with friends and filled to the brim with life, laughter and love.

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That we are on this trip is miraculous in and of itself. Since Rich’s hospitalizations this year, there has been a big question mark on whether we would be boarding the plane at all.

We began the entresto in earnest while in the hospital. It had been hammered into us that this was THE drug for heart failure. We’ve had difficulties with it but were ready to be on board and do what we could to tolerate and embrace this medication. The positive results by others were giving us strength. The goal was to have Rich on three heart medications to keep his kidneys happy and to help heal his heart. Entresto, Hydralazine and Isordil started slow and easy. Half doses, spaced timing of meds and the slow introduction of each of the super three. We found any two, in any combination, dose or timing was fine. When a third, again, of any of the combo, was introduced, we found the low blood pressure numbers returned, the fatigue beyond bearing. With our heart failure doctor texting and calling, we tried and re-tried the combinations. Finally, we had to come to a stop. Each modification had brought days of unbalance in all its forms. We had one week before we boarded our plane… we had to allow two meds to settle in and hold off on the third. There was no other choice if we were to travel.

Rich was advised to stop his cardiac PT until after our return. And as for our travels, he was told to avoid hiking. Avoid the very thing we went to do! How to not plod through rock strewn fields, along windswept cliffs, by Guinness-colored churning rivers and streams, through changing autumn woodlands? To walk the city streets of the Troubles and in the paths of writers, musicians and artists? We’d have to find balance as we have all along this journey. As we continue to try to find with medications. To temper the eagerness of travel with the realities of the physical heart.

As with all things, Rich welcomes our travels with gladness and intentions to experience it all. We prepare with the trekking poles that saw good use in Iceland… the 2016 trip we took to successfully test our post-transplant travel waters. We laugh that just one letter changes the names of these two countries… as if a simple typo took us from one instead of the other. We continue to pack as wisely as we can. Wind and weather provided for. Plans for keeping to our way of eating as much as possible to maximize heart health. We look for all the variables that may trip us up and discuss modifications that we may need to use.

The itinerary that Arlene and I work through is a wonderful mix of history, food, landscape, food, music, food, architecture and, yes, more food. We try to find an equilibrium between forts, castles, abbeys, tombs, hills, cliffs, stone circles and waterfalls… although we do seem too excited by food! We dissect travel times and try to figure how long we’ll spend where. We wildly miscalculate our interests but even that ultimately becomes part of our adventure.

With Kevin steering on the wrong side of the car, and the car on the wrong side of the road, we make our way around Ireland. We lay our heads mostly in country-side B&B’s and castles at night. We meet and chat with fellow travelers. We enjoy the music of the pubs, share experiences with strangers and find we keep the memories of all we’ve met with us on our trip. Songs follow us in our travels. We embrace the Céad Míle Fáilte… the hundred thousand welcomes we experience. The lilting cadence of the Irish speech offers us surcease like a lullaby.

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We have a few reminders of health issues along the way. Despite our best intentions, it is not easy to keep carbs low in a country where root vegetables reign and salads are not the norm. Where time differences can be felt, where landscapes are rugged underfoot and where excitement overcomes caution. The northern Wild Atlantic Way tests Rich and with a few exceptions, he comes through unscathed. Our pace is more measured, and I keep an eye on the small cues of distress. A few unexpected hillside trails cause us to take a thing or two off our itinerary and offer us instead time to relax or enjoy some views we otherwise may not have found. A bit of weather meets up with us as two storms, Hurricane Helene and Storm Ali clash above us and buffet us around the Slieve League Cliffs. The sea was swept up the 1,972’ high mountain cliffs in a flume of spray and holding a camera still in the 100mph+ winds is near to impossible. As Arlene says “we could have come on a beautifully sunny day and had a wonderful time and taken great photos. Now we have a story!”

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A story. Our story. Stories intertwined with friends, family and those unknown that spread like a web and embrace us.

Two weeks yet also too soon we’re back home. Time changes once again. Congestion begins. Rich’s chest is heavy.

Is this a bug that Rich’s still-compromised immune system has picked up? Is it a response to the too-many carbolicious meals? Is it too much fluid from a tired, and so less efficient heart? Lasix is boosted, rest is sought. We’ve been too long without an infection. We’re not ready to travel that road again.

Tonight we plan, for the first time in the week since our return, to enjoy the photos we took and relive the goal reached. A magical respite. Years in the making, we’ve now, with a little help from our friends, sailed the clear blue waters, walked the high cliffs, strolled the country lanes, and sang the old songs of a welcoming land. Always will these days be in our hearts.

Postscript
By Seamus Heaney

And some time make the time to drive out west
Into County Clare, along the Flaggy Shore,
In September or October, when the wind
And the light are working off each other
So that the ocean on one side is wild
With foam and glitter, and inland among stones
The surface of a slate-grey lake is lit
By the earthed lightning of a flock of swans,
Their feathers roughed and ruffling, white on white,
Their fully grown headstrong-looking heads
Tucked or cresting or busy underwater.
Useless to think you’ll park and capture it
More thoroughly. You are neither here nor there,
A hurry through which known and strange things pass
As big soft buffetings come at the car sideways
And catch the heart off guard and blow it open.

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When Cardiology Meets Obstetrics

When we were pregnant with our third child, we were told to attend a refresher Lamaze class as ten years had passed since our last pregnancy. Figuring a free tote bag and some diaper coupons would be worth it, we dutifully went. In the middle of the class, the nurse leading the group told us about a new doctor in the practice. Fresh off the obstetrics assembly line, no one wanted to give birth on his watch. They encouraged us, however, to make at least one appointment with him as we neared our respective due dates. Meet the man in case he is on duty when your water breaks.

We did and as we walked out of the office, we said to each other, if this was our first pregnancy, we’d be scared shitless! This guy gave us every worst-case scenario, told us to get every test in the book. He had new knowledge and he wanted to share it…he couldn’t help but share it. By the time we left, there was the potential for a real freak-out. He led with disaster.

As fate would have it, he was the doctor in the practice that was on call and ultimately, the guy we were glad to have by our side when an emergency c-section was needed. His gentle yet sure manner was a perfect counterpoint to this new development.

Today we have seen more specialists and had more procedures than one would think possible in one day.

After a full afternoon of waiting for the angiogram to be done Wednesday, it was finally our turn. The expectation the doctors (and we) had was that the pesky left bundle branch blockage would show to be a pesky nuisance, the root of all discomfort. They’d clear up the blockage, pop a stent in place, and voila! Our ejection fraction would adjust itself from its normal 40-45% from the early chemo days to a healthy and normal 65% and we’d be running marathons in no time, despite the fact that we don’t run marathons.

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Waiting

We do, however, have one of Rich’s original goals in place… we’ve booked a trip to Ireland in September. In three short months we’d be, with friends, experiencing the often wild and awe-inspiring island country from top to bottom and round again. Waterfalls, rivers, mountains, ocean cliffs, ancient ruins, pubs, villages… the stuff of literature and dreams. With Arlene and Kevin doing the driving and, as before, our support and companions, we’d see our goal come to life. We find we’re telling everyone so they understand our personal goals… This little tune up of ours, is merely a tune up to complete our preparations before we’re flying off to the land of my fore-father’s birth. And one of Rich’s dreams. Will the results of this hospitalization affect those plans?

Rich came out of that operating room and, test not quite complete, we’re admitted for a stay in the cardiac unit. Our tune up is not so quickly done. Rich’s heart has had since March a mere 15-20% ejection fraction. Time has not improved it. There is fluid in the pericardium which is the congestive heart failure that was suspected. But not only the left side of his heart is weakened. The doctors are dismayed to find the right side is weakened as well. The low blood pressures he has been experiencing, this angiogram and the tests that are to come will show that heart failure is the right description of what he has been experiencing. His blood hasn’t got the oomph to make the circulation effective… the pump is broken. Our own cardio doctor is recommending that we be seen here by the cardiomyopathy group.

Rich has been given a double dose of Lasix and admitted to the cardiac ICU floor; the CCU. Once more, he in a hospital bed, me in the standard vinyl recliner, and we settle in for the night, looking forward to the morning rounds where we’ll get some answers. As always when in crisis, we’re glad to be where we are.

One of our first doctors to stop in is from the cardiomyopathy group. She gives us a brief rundown on Rich’s condition and how it applies to her specialty. She applauds and approves the ketogenic way of eating we do. She will stop in later in the day.

When we do see her again, her demeanor has changed. She begins discussing what our options for treatment will be for the heart failure Rich is experiencing. Her opening is about heart transplants. Wait, what?! We went from expecting a quick stent procedure to ripping out his heart? She discusses the benefits of having the transplant assessment done in conjunction with the other evaluative testing Rich is undergoing in order to have that all in place.

While it makes a certain sense, it reminds us of that obstetrician 26 years ago who felt the need to give us all the doomsday possibilities, so eager was he to impart his new-found knowledge. Instead here we are listening to grant money, no cost to us thanks to a grant and adding to the growing prestige of the heart program in this hospital. Wow, we hit the jackpot! She ends with “but of course, our goal is to leave you with the heart you were born with and find other solutions first.” Alrighty then. Better. Because a groupon for a transplant is just too bizarre.

We listen to the rest of the options including a heart pump which would entail another four week hospital stay or simple medications… the last being the treatment of choice. Visions of Ireland begin to fade.

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First try for swan catheter. Before it turned into a Dexter set.

In between that first and second conversation are the tests, procedures and consults. His ejection fraction still at 15% is confirmed. Next, they stop his current heart meds and begin with Milrinone which is to help the contractions of his heart so the flow of blood will be stronger. After a few hours to let the meds begin to do their work, they feed a swan catheter into the artery in his neck. They will use this, while it is all hooked up to a monitor, to measure his heart output or how well the pumping action is improving. Improvement being our person preference! Twice they try and fail. His room, set up as a sterile operating room, looks like a crime scene. It’s decided that they will go to the cath lab to use some radiography to guide them along. Turns out some scar tissue from his chemo port needed to be cleaned up and then they were set. We thought what he was getting would look similar to the triple lumen that was used in the stem cell unit. Discreet. What he now sports looks like an array of medals on epaulets; his shoulders dripping with access points off a slew of IV tubing. And the catheter’s end, coming out of his neck, forms a swan neck type curve and connects to all these medals of honor.

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just a portion of the medals of honor

There are x-rays, sonograms, attempts to insert an A (arterial) line in Rich’s arms for additional monitoring. His veins are too compromised due to his condition. The odds are they will plump up when the pulses are improved. It’s decided to wait 24 hours and try again.

With all the invasive procedures and contrasts used for helping us to find answers, as well as mentally processing the unexpected diagnoses and possible treatments, the night is uncomfortable on a number of levels. Sleep eludes us. But there are signs that these new meds are working. Belly bloat way down and breathing eased. It’s a busy night and we hope we’ll have time for rest in the coming day.

The good news comes early in the cardiac care unit. An x-ray is needed daily to check the placement of the catheter. The readings that are coming from the monitor hooked up to the swan catheter are more than we could have hoped for. The Milrinone is helping Rich’s heart and besides the expected changes that will bring, we’re thrilled that his oxygen levels, which had been anywhere from 80 to 100 are found to be a full on 100% O2 saturation without any supplemental oxygen. This truly proves that so much of what our pulmo doctors have suspected.

Finally, the daily weigh-in. In 48 hours, Rich has lost twenty pounds of water weight. The fluid around the heart in the pericardium and in his belly is lessened. Hydralazine is added to help open the veins to let the improved output flow.

The downside to these meds are that they give his creatinine levels a slight rise. All tests have shown that his kidneys are clear of any issues other than damage that is also chemo induced. Our nephrologist feels that the steady elevated numbers have been stable since his cancer treatment so our patient’s higher than the norm numbers is something we’ll monitor but will not interfere with. This added blip from the new meds is explained by her in a way that proves her compassion. “Our main concern is Rich’s cardiac health and his personal well-being. If his comfort and daily life as well as his cardiac health needs these medications, we can be comfortable with this new number for his kidneys.”
It’s also felt that, like his pulmo function, his kidney function will ultimately head in a healing direction and thus better numbers as his cardiac function improves. That this doctor is looking at the whole picture of living life confirms so much for us. This team of caring health professionals have blessed us with their knowledge and persistence.

The plan now is to tweak medications to optimum levels, currently adding in and create the balance Rich needs. Once those are set up using IV infusions, we’ll then transition to oral meds for home use. Making sure heart and lung function maintain improvement and reach the goals we need to go home is the next step. Monitoring and less and less invasively through the weekend, we expect optimistically to be here til mid-week.

Lastly, our cardiomyopathy doctor, the one with the heart transplant conversation stops by again. She’s thrilled with the turn-around that has occurred. Before she leaves, she enthusiastically said “Remember that horror we talked about yesterday? Forget it. Forget it all. Those needs are good and gone!”

Tonight we expect to sleep soundly.

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Loving all the good news. And Rich’s neck ware, the swan catheter that’s attached to the medals of honor.

How Do You Spell Love?

The sound of laughter fills the house as the grandkids tumble into Rich’s lap. It was not too long ago that one small step by the littlest of toes on Rich’s feet would have had him scream in agony. Now, he’s full of smiles as they clamber over his feet and up his legs to get his attention. The impossible has become our new reality.

Our goal these past six months has been to try and resolve the neuropathy that has plagued Rich as he went through chemo. Instead of going away as it did the decade before, its intensity increased. Numbness spread. Spikes of pain would have him in tears. Spikes that were at times unremitting. And so we began with the Cymbalta which gave us a fifty percent reduction in the neuropathy but didn’t do much for the spiking pains. We then added medical marijuana; visiting those eerie men in suits to get the legal prescription filled every month. The relief was now at seventy five percent.

But those spikes continued. We were given methadone but were hesitant to use it as the directions seemed to indicate they were not an “as needed” medication. We held off. In September we visited our Ketamine group. At first we balked at the idea of this protocol. The drug is also known on the streets as Special K, the date rape drug, and is also used in veterinary medicine for anesthetizing horses. Horses! It makes you think twice.

20170612_121430Weighing our options, we decide to give it a try. Our hope then and now is that it would allow us to wean off the other meds and lower Rich’s dependence on prescriptions for relief. And so, we began. Unlike so many other infusions, Rich is alone in the treatment room; I’m not allowed to stay. The idea is to keep him quiet and still. With possible side effects, all variables are removed. No music, no reading. Low lights, warm blankets and a slew of leads checking his vitals sticky taped to him everywhere. He is under constant monitoring. Over a period of four hours, a small dose of ketamine drips ever so slowly through the IV and into his arm. He dozes.

20170612_122133The effects of the drug as well as the relaxant they give him to forestall any hallucinatory dreams gives him rest. He’s released with warnings as if he’s had surgery. In truth, the experience is exactly the same, just without a knife. As we wait for our ride home, Rich realizes that he has no spiking pain and we share a grin. When he gets home, he sleeps.

The next day, he feels refreshed and so we see that little bit of improvement, subtle but there, and we rejoice. Week two seems to follow the same. And again, the improvement builds. We feel a sense of relief. We’re advised to continue on the Cymbalta and MMJ and we do. They are our safety net. And so we go into week three with high expectations. How foolish! The night is filled with spiking pains, unrelieved by anything but methadone. Body aches are palpable like a revenant in the room. The misery is thick as a fog that sends a shade over any hope we may have had. The internet offers us some glimmers. We read that others have experienced this as well. We wait for morning to call the ketamine group who confirm our suspicions… par for the course. They just never know the timing of when or if. As with many discomforts on this journey, a good sign is among us. We’re told Rich’s nervous system is resetting. Where previously the bed sheet against his feet would have brought agony, the ketamine is pushing back the pain volume knob and bringing it to the norm. We’re looking for his feet to just acknowledge the existence of the sheet instead of bringing on tears. A methadone tab gets Rich through the night. It is effective in random administration. We’re grateful.

There was some trepidation as we approached the fourth infusion. Neuropathy was now so minimal as to be off our radar. Gone were the pins and needles and the burning pain. The frequency of the spiking pains and their intensity diminished more and more each day. As if in a final farewell, a cluster of weather affecting barometric pressure brought on a flurry of spikes that were concentrated in one spot. Agony! A single Methadone tab was once more brought into the mix. The tide has turned. To our delight, it was as if a switch had indeed been flicked and the improvements began to come faster and faster.

Now, after the last of the infusions, week five began the miracles. Feeling began to come back into Rich’s feet. Between his toes is still numb, but for the first time in a very long time, he can feel himself wiggle his toes. And oh! The texture of socks! Everything but those spiking pains…. They don’t register. The have become a mere blip. There is a confidence in Rich’s step. His pace has improved. His cane only comes into use when tired or vertigo hits. He delights in the sensation in his toes. We’ve been told we can expect three to six months of relief. Rather than count the days, we head off to celebrate. One of Rich’s goals expressed when he was first diagnosed has been to visit Colonial Williamsburg.

15000741_10153501587557824_2703793561621062239_oSo for our anniversary in November, shortly after the last infusion, we take our Amtrak train and spend an extended weekend sleeping, eating and roaming in nothing but historic buildings. When the tiredness hits, we only have to look out through the old wavy glass pane of our room where once Martha Washington’s family lived to watch the fife and drum corps make its way down the street. To see groups wandering by lantern light. And when rested, to step out our door and cross the cobbled streets to the nearby tavern for a few small plates and to raise a glass to the musicians performing. As with all our travel, we are renewed.

 

At this point, now January, we are now ending our third month since the ketamine treatments ended. After my brother’s death, we experienced setbacks. Bronchitis due to the crowds of the wake and funeral. And again bronchitis following the traditional Greek forty day memorial. Germs seemed to find Rich wherever we went.

We were comforted by the knowledge that a year prior these infections would have manifested as pneumonia and required hospitalization. But more troubling still was the recurrence of spiking pains. Has our reprieve ended so soon? As is our wont, we looked at the data. Stress seemed to have brought these pains back into our lives. Each time that spiking pain manifested itself, it was during times of either stress, such as the wake and funeral, or, a change in routine as it would be with the kids home and the regular day to day tasks were thrown to the wind. Even in anticipation of an event that may prove to be too much.

We’ve discussed biofeedback with our pain management gurus and they are looking into where we should go. In the meantime, we find that just the discussion of the possibility of it being stress-induced, however subconsciously, has made a significant difference. The mind/body connection is at work. That Rich is open to these possibilities is a blessing.

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As our pulmo doctor once admonished Rich, “When you are well is up to you.”

And so, we once more got aboard Amtrak’s Lake Shore Limited and headed up to Rochester to celebrate the turning of the year for our two littlest grandsons. As the weekend comes to an end, Rich sits contentedly tired on the couch and the laughter of both man and boys is heard. Our family rejoices that those little feet that climb to sit on Poobah’s lap to demand a kiss and a snuggle have not brought pain but pleasure.

Piglet: How do you spell love? Pooh: You don’t spell it, you feel it. ~A. A. Milne

Take a Giant Step Outside Your Mind

“…Remember the feeling as a child When you woke up and morning smiled It’s time you felt like you did then. There’s just no percentage in remembering the past It’s time you learned to live again at last. Come with me, leave yesterday behind And take a giant step outside your mind.”

This song has been a little earworm going ‘round and ‘round in my head for the last few days. We find ourselves excited with our Icelandic adventure to start in a few hours tho’ there is just a tinge of apprehension coloring our plans. This is, for us, a huge leap in Rich’s recovery. In the past two years, we’ve taken weekend trips to visit family or traveled with friends. The support has always been close by and there always has been accommodation for Rich’s needs. Tonight we step onto the Icelandair plane and take, as the Monkees sang, a giant step outside our minds.

With us will come our assortment of medications both required and emergency. Rich’s cane will be our companion. We’ve opted for tours instead of our usual take charge kinda travel. Our schedule is varied but gentle. Our trip is a quick five days. With all these precautions, we’re still trying to get out of the patient mode that has deviled us on our journey.

“You stare at me in disbelief You say for you there’s no relieve But I swear I’ll prove you wrong. Don’t stay in your lonely room Just staring back in silent gloom. That’s not where you belong”

Ah, patient mode. We were well on our way to getting out of that gloom when just about a month ago Rich woke up with chills. Dammit. The Magic Fingers Bed was back with a vengeance. It took a full hour to stop the rigorous shaking that exhausted him and left him aching from head to toe. A handful of meds to counter the symptoms of an infection that seemed on its way, we waited for the doctor’s office to open.

I went to work figuring that this would be a quick Tamiflu script and we’d be fine after a few days. This was the first time in these two years that I was not planning on going to an appointment with Rich… because, you know, we’re getting outta patient mode. As I was speaking in a meeting at work, I suddenly stood up and said “I have to leave” and walked out the door. It was odd how strong that feeling was.

Rich was already en route via taxi to the doctor’s office and I texted him that I would meet him there. By the time I got to Great Neck, he was waiting in an exam room, having had an xray of his lungs to rule out one of the vast arrays of pneumonia he seems to latch onto. We sat and chatted while we waited for a doctor to see us.

During the short wait, Rich became uncomfortable. He complained it was hot which to me was understandable since he still had his hat and coat on. The complaints continued tho’… quite unlike him. The light was off in the room as is our wont. We find it easier to relax in a dim room when we’re in situations that could be tense. We’ve at times joked around by putting a candle gif on our phones and pretending we were on a romantic date; anywhere but a doctor’s office.

This time the romance ended when Rich started making heaving sounds. I flicked on the light and could see that this spasm wasn’t coming from his stomach but from his throat. I asked him if he was ok and there was no response. I got up, saw he was pale and clammy… beyond his glasses, his eyes were rolled back in his head as he continued to make these retching noises. I called out for help and the staff responded quickly, checking his vitals and getting him on oxygen… and calling 911. He pinked up quickly and came around though for the life of him he could not figure out how many fingers the PA was holding up in front of his face.

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And so started a thirty-six hour marathon stint in the ER. The one place we didn’t want to be. Rich does get a separate room when he is in the emergency room because of his lowered immunology. But as a melting pot of germs, it’s still not optimum. His blackout was probably due to dehydration and a drop in blood pressure but being a single incident and his diagnosis to be otherwise Type A flu, we began our campaign to get discharged which was not as easy as one would think. Until our pulmo guru came on duty and stopped in. Immediately he was on board to get us home even while the hospital was prepping a room on the cardiology floor. Once again we are filled with gratitude for the team we have. They listen to what we say and respond with common sense. We’re blessed.

Once home, Rich’s recliner became his cocoon as he worked through the effects of the flu. We were again sleeping in the little room on the main floor as stairs were not yet possible. The walker was brought back into service. And yet it was good to sleep on something other than the cold tile floor. It took two weeks for him to begin to get to where he had been before this episode, the Tamiflu knocked back a good amount of the discomfort relatively speaking, but slowly progress was made.

And now prep for our trip began in earnest. But this episode did raise some flags we had thought we could put away for good and brings us the slight apprehension that we are doing our best to totally disregard. Instead we’re focusing on doing what we love most together… seeing new sights, meeting new people. The weather holds no promise for a viewing of the Northern Lights, the Hákarl fermented shark will still probably be the worst tasting thing we’ll ever try, and English will not be the first language of the citizens of the city we’ll call home for the next five days, but our itinerary will be more than we could have dreamed of doing a short six months ago. And for that we’re grateful. It’s time.

“Come with me I’ll take you where the taste of life is green And everyday holds wonders to be seen.

Come with me, leave yesterday behind And take a giant step outside your mind.”

Live Long and Prosper

Two faves converged on November 10th this year. The Oatmeal, that marvelous online comic by Matthew Inman, and Star Trek came together in a poignant story of a moment in Gene Rodenberry’s life.

Growing up, Star Trek was one of the shows that brought our family together in front of the TV. Not for my brother and I the Lawrence Welk show… nope. We watched the future…. Going boldly where no man had gone before. That it ended up in syndicated reruns very quickly didn’t negate the attraction to the show. We continued to watch, exclaiming “Aw! This is a GOOD ONE!” virtually every time.

Rich and I continued that tradition as we dated, being attendees at the first New York City ST convention. We went to Nassau Coliseum to see Gene Rodenberry speak and to see the infamous blooper reel as well as the first pre-Shatner pilot episode on a big screen. Our son Richard was a very convincing Spock one Halloween. Yeah, we’re fans.

This particular day the online comic caught my eye, not only because it looked like a major departure from the artist’s norm, but also because of the Star Trek connection as it described Roddenberry’s actions as a crew member during a commercial plane crash in the Syrian desert. He calmed passengers and rescued them from the burning plane. But it was the last panel that truly resonated. The one that sums it all up:

“This story is not intended as an ode to Roddenberry, although he certainly deserves one. Prior to working in television, he was a decorated WWII pilot, a plane-crash investigator, and an LA cop. He survived three plane crashes. This story is intended to remind you that our journeys are short. Roddenberry saw life’s ephemeral nature lit up against a backdrop of stars. He saw that we are all passengers pitching downward into the night. He saw that we are all helpless. So get up, and help someone.”

From that moment, Roddenberry changed the direction of his life and turned to writing and television; creating Star Trek… a show that in many ways became a moral compass for so many of us.

Sometimes, when you get up and help someone, that someone is also yourself.

We’ve been trying to change our direction as well… trying to get out of that patient mode. To do so, we continue our baby steps concept and it seems to be working. Right now, our going boldly is tentative. After our night in the city, our next big event was travelling to Atlanta to celebrate our cousin’s wedding. We were so excited to celebrate the union of this wonderful couple and at the prospect of seeing family that we had not seen in close to a decade… from literally all over the world. We had four weeks to prepare.

Our usual pre-travel precautions were put into place: car service, airport wheelchair, an ion treatment for our hotel room to ensure allergens are removed. We also had to get Rich fitted for a rented suit to deal with the prednisone weight.

Before we traveled, we visited the cardiologist to check on Rich’s swollen legs and make sure that they would not be an issue for flying. A sonogram revealed no clots… we’re approved for travel. Compression socks are recommended during the flight. In an odd twist of medical multi-use, Rich is given a prescription for Spironolactone to help with the edema. The monograph from the doctor lists one of its uses as a birth control pill. The internet explains that it’s used to treat precocious puberty. Puberty??? He’s barely past being one year old!!! Manboobs are a possibility?

We decide to test drive the socks. At first we think we have the wrong size… no way is that little tube gonna fit those cankles! The doctor told Rich the swelling is to well above his knees. But some more internet research and some careful cankle measurements and indeed these are the right size. Thankfully, there are internet instructions on how to get these buggers on. Success!!!

1836728_10152765430177824_6597185865145480321_oOur travel weekend continues our baby steps approach. We arrive in Atlanta the night before the wedding. The next day, we meet up with our family for lunch and afterwards Rich opts to go back to the hotel to rest instead of sight-seeing with the rest of us. Later we get ready for the night’s events in a leisurely manner and we consider it a success that Rich is able to stay for a few hours at the venue before he heads back to the hotel.

Rather than pushing, he spends all day Saturday alternately resting and sleeping before meeting up with the rest of us for dinner at the hotel. Sunday we meet up with family one more time. Then it’s back to the airport for what turned out to be a marathon wait through a number of cancelled flights. As the hours wore on, Rich was fading fast. We finally reached the end of the possibility of flights home for the day with none actually going to our destination and we had to rebook; refusing any early morning flights or anything other than non-stop. Rich’s comfort and recuperation needed to be taken into consideration.

At the hotel the airline housed us in overnight, the staff was nothing if not gracious and accommodating. We were granted an extended check out time so that we didn’t have to sit in the airport any longer than necessary. We were put on a concierge floor which included an amazing breakfast buffet in a cozy lounge. After the stress of the cancelled flights the day before, this was a welcome respite. They even provided wheelchairs for the return to the airport, making our return home ultimately rather unremarkable.

Thankfully, Rich’s birth control pills were effective in bringing his edema down… still there, but improved. His lack of menstruation doesn’t seem to bother him.

We meet with our stem cell and pulmo gurus. We are granted a great gift… we can stop the prednisone. We’d been at a mere 1mg per day along with two twice daily nebulizer treatments. We can eliminate all steroid meds but one nebulizer and that we only need for another two weeks. Our wheezing watch begins. Within a couple of days, we hear a whisper of wheeze. We keep the duoneb for a day or two before going back on the plan to stop. This is not the time of year to be careless.

Getting off the prednisone is a big leap… we hesitate to jinx ourselves by celebrating it too soon. We’ve tried and been unsuccessful before… ending up with infections or asthma attacks that have hospitalized Rich. But as we look back, we see a pattern that gives us hope. Pneumonia has been on the back burner for months. Each hospitalization has been milder than the previous. We knock wood and cross our fingers. The Greeks are all spitting at the devil. There is no evil eye too remote to help us ward off repercussions of celebrations.

We have been told that it takes two weeks for the effects of being off the prednisone to show and in the past that has held true. We tentatively celebrate.

We continue to review the current list of medications and look to see what we can eliminate. There are some medications that are necessary to continue, either for heart health after the assault by the chemo or for immunology protection. Those are not ours to change. The immunology meds are to remain until Rich’s childhood vaccinations are re-administered. The prednisone has to be clear of his body before they can begin… hence our tentative celebrations on its demise from our box o’ Rx. Our next attempt at stretching our boundaries will be to wean off the Neurontin to see what the status is of the peripheral neuropathy without it.

It’s important that we try to get off of medications as quickly as possible to clean Rich’s system of these chemicals that do so much good but have the ability to do so much harm. It’s a fine line to traverse and we hope to get as close to med free as possible. But it’s clear very quickly that Neurontin is here for a while more. Within a day the neuropathy is making his feet jump at night from pain. Thankfully, the medication’s return has results just as swift.

We unfortunately have the need to start up some other meds this past week. As if to celebrate an anniversary of health status, the runs are back almost a year to the day. Immodium and then the prescription Lomatil are back on board to stem the tide. We need to contact the doctor to get tested for that dreaded c-diff again and refill the Lomatil. With luck, we won’t need to visit the opium den again but if we do, it’s good to know that this option exists.

We research and find this poopathon can be a side effect of the prednisone withdrawal. Rich’s been on this steroid almost continually for eighteen months and at times on extreme dosages… there is just so much built up in his system and the very slow tapering can’t totally compensate for this. We look at this latest development as evidence that the prednisone is on its way out. And with it begins to go the bloat… the ninety-five pounds of water weight that would just not go away over the last year is slowly, very slowly, beginning to resolve. While the process itself is not what we would prefer, if this is the way we get past the steroids, then so be it.

When this newest development comes to an end, it will truly be time to find a new direction.

To reach for the stars.

To Live Long and Prosper.