I wrote this on Friday night, July 30th before I went to bed. I kept delaying putting my head to pillow; not ready yet for this last night to end. This past weekend was bittersweet. We held my mom’s one year memorial service; her final instructions to me and the Greek tradition now fulfilled. While we raised a glass in her memory, I looked around the circle of friends and family gathered in our garden, glasses in hand waiting for our son Richard to speak, as he so eloquently does. They’ve all been on this rollercoaster journey with us since Rich’s first diagnosis in 2004. As have those who couldn’t join us but have sent their messages of love and support. For seventeen years we’ve been surrounded by a family created over the years who have kept us afloat mentally, physically, and spiritually. They have celebrated and cried with us. It’s hard to relocate far from their warmth although we know it, and they, will be with us always wherever we are. So below are my thoughts on that last night as I walked through the house with only the lights from the street coming through the windows. As I did, the final song of Peter Jackson’s movies ran through my head. Although this is not the last goodbye, they did seem fitting.
July 30th, 11pm:
It’s a bit surreal. As I have been since Covid started, I was working remotely. Only today the house is near to empty. The rugs, lamps, photos, furniture is for the most part gone. What made this house our home for the last thirty-odd years is on its way to Rochester, NY. There waits our new house. In the area of the city known as the South Wedge, we can walk to the river, parks, pubs and restaurants. Initially it was to be our getaway-near-to-the-kids; a charming 1888 brick townhouse that would host grandkid sleepovers and visiting guests.
And then the reality hit. Rich’s health is better up there. The brick house has always been a two family. Our space on the first floor offers one level living. Without those stairs, Rich’s BP remains steady even as we tackle the expected projects to make this place our own. We’ve tested this for months, alternating weeks up and weeks on Long Island. Every time, within 24 hours of being downstate, Rich’s BP would drop. There is no way to live on one level in this cape style house without some major changes. Our heart failure guru said it best: “You’ve found the problem and you found the solution. You need to implement it.”
News travelled fast. An hour later, we’re at the office of our kidney failure guru. “I hear you’re moving.”
And so here we sit in a near empty house. To our chagrin, we find even the toilet paper has been packed and shipped. The time between decision and today has flown by. What we refused to consider a few months ago is now a reality.
Our files from NSUH will be transferred to University of Rochester Hospital system. What a read that will be, to be brought up to date for our new health care group! Appointments and meetings will take place in the coming months as we learn to navigate this new mental and physical reality.
Tomorrow at 6am we load up the car with some things that we didn’t trust to a truck and for the last time as Long Island homeowners, we cross the bridges and head up to our future.
…Many places I have been Many sorrows I have seen But I don’t regret Nor will I forget All who took that road with me
To these memories I will hold With your blessing I will go To turn at last to paths that lead home And though where the road then takes me I cannot tell We came all this way But now comes the day To bid you farewell
Rich and I spent many weekends when we were dating going to movies. Before the phenomenon of Star Wars, there were those double features where we paid one price and saw two movies. You could stay in the theater all day. There were no recliners and no reserved seats. The house didn’t clear out completely before the previews began again. Parents could and would drop their kids off in the morning with a stipend to watch movies and grab snacks before they were picked up in time for dinner.
Twin theaters were just beginning to pop up on Long Island, but more often than not, we went to a theater that had a simple marquee. A double feature or a midnight showing of a cult movie. Screens were wide and balconies were massive.
As this was also the days before digital cameras and unlimited selfies, instead of taking photos, I had a scrapbook. In it would be ephemera of places we’d been; napkins, programs, announcements in the paper. Also in there were the simple ticket stubs from the many movies we’d go to. Carefully would I write the date and movie name and stick it into my book. And so many of these movies were by Mel Brooks.
As our kids grew, we enjoyed introducing them to the pantheon of Brooks. Part of our trip to San Francisco found us under the Golden Gate Bridge where the telephone booth of High Anxiety was set. This homage to Hitchcock is part of our lives, as truly all the Mel Brooks canon, and the laughter they bring is healing.
The PET scan in the early spring gave me a touch of nervousness that we usually don’t come across because of all the oddness we’ve been experiencing for months. We let that go when we received news that it was all good. Begone scanxiety!
Then Rich went to have a physical for scout camp with our grandson and blood work was done. When our general practitioner called back, he told us to contact our team at North Shore. There was a rise in Rich’s LDH… a marker for Lymphoma. Coupled with night sweats, weight loss, fatigue… it doesn’t look good. All indicators point to “it’s back”… our hearts sunk. The doctor doesn’t say this directly, but it’s inferred. For the first time in this entire journey we started in 2003, Rich shook his head and said “Why me?”
This isn’t where we were planning on being… we’re nearing that five-year mark… it’s time for normal to be in our sights! We’re. So. Close.
“Key Change!” as Mel would sing.
We touch base with our stem cell guru, send her the blood results and ultimately we’re advised to wait a few weeks and come in for another panel to see which way the wind is blowing. Rich’s numbers are within the high normal, but no one likes the trend upwards. Everyone hopes to see a different direction in a few weeks. There are a number of reasons for a raised LDH. Cancer is one but also some damage to the kidneys or liver… and our guy has not been following protocol to the letter as of late.
Waiting. We suck at waiting.
However, in the meantime Rich is approved and scheduled for his sleep study. With a small backpack of toiletries and overnight clothes, he spends the night wired up to track his every movement from the smallest breath to the largest leg movement. Heart, brain, lung, blood oxygen as well as the arm and leg movements and breathing patterns are all collected from 8pm to 5am through a variety of monitor pads stuck here, there and everywhere. As one would expect, not the best night’s sleep.
And now we wait for the results. We get no better at waiting.
And since we are so bad at waiting, we nudge the clock a bit and go for blood work a little earlier than advised. And, again we wait.
The results come back with a dip down on the LDH. There some other numbers that make us nervous, but we’re told to leave those alone and to come back in a few months. Watch and wait. The stem cell guru is not concerned. But then again, she isn’t living our life.
We take a deep breath and move on. Breathing.
We get back the results of the sleep test and it appears Rich’s brain forgoes the reminder to breath; centralized apnea. And while he sleeps, he pauses. Long pauses of breathing. Concerning pauses of breathing. In the course of an hour, he pauses 29.7 times on average… basically half the time. No wonder he’s so fatigued! Coupled with centralized apnea is the suspicion of obstructive apnea as well. This combination is not as rare as we thought.
There is a brief respite of tests while Rich goes to summer scout camp with our Boober and back to his happy place within the scouting community and in the woods. He pushes himself to test his abilities knowing there are people who will keep an eye out for distress on those hikes with inclines. Knowing too that he has his loop monitor to record any heart issues that may occur. He strikes a balance and for the first time in over five years, he sleeps in our tent again; this time with his grandson at his side. When needed, he can and does grab a ride to a campsite or activity area. He’s learning to strike a balance between moderation and pushing through. And it works. He comes back energized but understandably tired… but it is a good kind of tired.
He’s back only a couple of days and he is scheduled for another sleep test. This time to determine what type of machine will work best for his apnea which his records show is a combination of obstructive and central… CPAP or BiPAP. Both use positive air pressure, but the CPAP uses continuous steady pressure during inhale and exhale. The BiPAP, which Rich has had in the ER when he was badly desatting, has the ability to be set to a dual setting so that the inhale and exhale can have a different setting with generally the inhale being more forceful. BiPAP is helpful when the lungs need a break as they did for Rich when he had RSV by giving a little extra support.
But the overall idea is to give Rich the best night sleep whether his brain is paying attention or not. And that good night sleep will help his heart heal. The data is being analyzed. And so, we wait.
We do find that the loop monitor has taken some of the caution from any exercise or tasks that previously made us nervous… we have that little gizmo to keep an eye on any issues that may arise. The promise of a better night’s sleep gives hope of additional energy and to take advantage of the monitoring’s watchful eye and further free Rich from fatigue.
Sure, we figure that there will be moments, as Brophy would say “I got it. I got it. I got it. I ain’t got it.” But we intend those to become fewer and farther between.
And to help us through those “I ain’t got it” moments, to keep ourselves out of the Psychoneurotic Institute for the Very, Very Nervous and the care of Nurse Diesel, we’re finding new ways to move past those moments instead of trying to fight against it and waste our energy. We’ve done well in the past to avoid the anxiety of these routine follow-up tests. It’s time to get back on track and put it behind us… time to let our hearts soar, once more!
When we began this journey five years ago, we saw an end goal… chemo, stem cell transplant, recovery. Three simple stages. We didn’t fool ourselves that the process day to day would be simple or that we wouldn’t have down days, but we could tick off the cycles of chemo, the days in the stem cell unit, the milestones of recovery.
After our experience with cancer in 2004, we figured, as before, it would take five years to recover to pre-cancer life… or as close as we could get.
Our blogs to keep our friends and families informed of our progress began with the title “The Waiting is the Worst.” And it is…. we seem to work better when we’re moving forward, towards a goal, towards a treatment, towards recovery. We’ve had those moments when we seem to live in a fog of despair when we push to find the light. And we work to get through them by finding the pinpricks of light like faraway stars that can guide us until the sun shines through. A light at the end of a long tunnel. But lately it feels like that light at the end of that proverbial tunnel may just be an oncoming train!
As we near that five year goal we find ourselves waiting once more for an implantation. Instead of a port for the administration of chemo and blood products, we were waiting for Rich to become Borg once more with a Heart Loop Recorder placed near his sternum. We were excited for the information this little medical marvel would collect and store… answers would be forthcoming!
For the first time outside of a hospital, he will be monitored 24/7 via this small paperclip sized data gathering device. It’s slipped under the skin in an outpatient, local anesthesia setting. The procedure is fairly quick and requires no more than one stitch and a little medical glue. The incision itself is no wider than a pinky fingernail.
We’re given a box little larger than what our cell phones came in. Inside is a monitoring unit that bluetooths to Rich’s recording implant. This unit now lives next to our bed and, somewhere between midnight and 5am, it connects to the implant and checks the data for any abnormalities. If it finds any, they are sent to the doctor’s office. Our Borg just needs to be within ten feet to connect.
Usually, and this is the scary part, Rich feels no indication of any heart incidents. If he did, the unit also comes with a small pocket-sized wand. That wand, in case of felt palpitations, syncope, racing heartbeats, or any oddities, is placed over the implant after pushing a button to activate it. The implant goes back six minutes, records forward to one minute past the point where the button on the wand is pushed and sets that data aside to send that night through the monitoring unit. This will tell the doctors if what he felt was indeed a heart episode or not.
In so many ways, we’re told, this monitoring will not intrude on our lives. When Rich is away camping with our grandson, the data will send when he gets back. Other than when he feels he needs to record an incident; he has no other action than to sleep near his monitoring unit. Each time we visit the doctor, they will download ALL the data and the implant will continue to record for three years. At the end of the time, Rich will be once more dis-assimilated from the Borg Continuum.
But we’ve had complications and find ourselves once again at the office of the cardio electrophysiologists well before anticipated. The site is tender; more than it should be at this point post-surgery. And then there are the night sweats. They start with chills; Rich is cold to the core. Then he wakes up drenched. Little fevers come and go. All the bedding and his t-shirt are wet and need to be changed. Initially, days after the surgery, he’s examined, and we’re asked to wait and watch as there is no evidence of infection. The incision site is healing beautifully. So, we watch, and we wait.
A week after surgery, he’s still experiencing the sweats and those odd little fevers. As the doctor and the nurse practitioner palpate the area, Rich jumps when they hit a particular spot. It’s decided to start antibiotics in a very Dr House way. If he doesn’t respond to the antibiotics after a few days, then it’s something else.
The aches, the fevers, the night sweats all continue at ten days post-op. But the site of the implantation is more comfortable. We decide to give it one more day before bringing it again to the attention of our gurus given that increased comfort. We’re not ready to stop the antibiotics yet if we’re seeing a better result. And perhaps this will be the night when the sweats will not come.
Watch and Wait.
And praying the train whistle doesn’t blow while we’re still in the tunnel… much better to be in the station and ready to hop on the train and move forward again!
Maria R. Conklin, writer of the blog Journey of a Tired Heart, writes of exhaustion beautifully and gets to the crux of what it is like to experience a fatigue that only those with a chronic illness or going through devastating treatment for a disease can understand. Those of us whose hearts are with our loved ones on these journeys can only nod and think “Yes, this is what I see. Here is truth.”
What resonates most, as Rich and I inhabit this place where living is a world of bright spots interspersed into a continual fog, are the closing paragraphs:
“Is exhaustion an emotion? I don’t think so, but is there a state of being more intense than exhaustion? I can’t think of an appropriate word to describe it, but it’s the state of physical exhaustion to the degree of leaky emotions. You know what I mean: when your eyes are tightly closed and you finally fully exhale, relaxing every muscle in your body and a warm teardrop slides down your cheek. Then another, and another. Just a few though – and it cannot even be defined as crying.
It’s not crying. It’s all that determination and courage you had to employ to get through the past four hours – at least what is left of them anyway. You let them flow, take in a deep breath and then let it out slowly. Just as quickly as they began, they end. No more tears. Just a sweet, wonderful, lifeless kind of surrender that can only be understood by those who have walked the tightrope between life and death.”
Since Rich’s hospitalization in August for that exercise related tachycardia, we’ve been traveling a very fine line between medication and wellness. As we’ve discussed before, the triumvirate of the main heart meds introduced over the summer are problematic for Rich when all three live in our world. Less so than when taken together at the same time during the day, but even the staggered dosing we follow now brings more fatigue than we’ve had to deal with for a while. After months of his energy failing more each day, we wonder for the first time if we’re with the right heart doctors. We try not to despair.
Unlike all our previous journeys, our goals are now ambiguous. We know that we’re not optimized on heart failure medications. But what is optimized? We’re told we’re on the lowest dose of entresto. So where do we ultimately want to be on doses? We know that there are variables that make this question tough to answer. How Rich’s blood pressure, kidney function and ejection fraction respond all need to be taken into consideration.
Even well aware of these variables, at this point, the frustration we feel makes us want to shake our doctors and scream “For fuck’s sake! How long are going to continue on the lowest dose of everything and feel like shit?”
Apparently, no shaking and screaming is necessary. Sometimes it’s finding the right time and the right person. We meet, as we do every two to three weeks, with the nurse-practitioner at the heart failure doctor’s office. We discuss wellness and issues. We discuss blood pressure and blood work. We discuss holidays and everydays. The conversation alone heartens us and happens organically when the nurse practitioner casually mentions a dosage goal. This gives us an opening to enquire about the other cardiac meds and get the answers we were so looking for.
We have a plan. We have a goal… or a set of goals. As per the heart failure guru, we want to max out on entresto and metoprolol. We want to adjust up/down/sideways any of the others to optimize heart function. When we hear that those other meds may be, can be, eliminated, we rejoice. If we can stick to two, Rich can once again feel that rush of energy as he did this summer. That feeling of “before cancer” that makes all the difference. We now hope for that goal.
Blood work is taken. EKG recorded. We wait for the news… can the meds be tweaked this week? And with blessed relief comes the phone call we waited for… raise the entresto. Finally, we’re moving in the right direction. The nurse gives us hope. She tells us perhaps when we see them again at the start of the new year, we can raise it to the next… the last… dose. Other meds have been halved giving rise to more rejoicing. This lifts our spirits and we’re ready to face the holidays. Glad tidings indeed.
Of course, we also brace ourselves. Each dosage change of the heart and heart related medications has an adjustment period that is brutal. It isn’t so much the water weight gain from the changes, it’s more an emotional roller coaster.
It doesn’t last long but seems an eternity when we’re in the middle of it all. Fatigue hits like a ton of bricks. The recliner is the only place Rich can be. And then comes the end of the first full new dosage day. We’re told that Rich’s reaction can be normal but it surprises us each time. He runs through what seem to be drunken manic-depressive episodes every five minutes. On the one hand, he’s laughing, way too much, about nothing and everything in such a way that it becomes a concern. It feels forced and indeed it is, but not in a way that Rich can help. Seconds later, he’s in the depths of despair, apologizing for all this trouble while he tries to maintain composure. And it generally is less than successful.
During these times, his blood pressure drops… crashing to numbers like 81/41. His gait is troubled and unsteady. The meds are playing and playing hard. Pickles help. They balance his electrolytes and bring up his blood pressure gently. We monitor his BP continually. The night is long and we’re both exhausted by the time we fall asleep. The one saving grace, we agree, is that the morning will have brought better balance.
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.
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.
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!”
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.
Our little pond in our tiny yard has been a source of calm in our lives. Each year we patiently wait for the leaves of our lotus to unfurl on to the surface. Later the flowers poke their buds up and spread their petals towards the sun. These same flowers retract under the water at night.
It is because of this rising from the mud that the lotus plant is associated with rebirth. From darkness, beauty. They teach us patience and show us we can rise above the miasma that sometimes finds us.
The past few months have seen us anywhere from the summit of mountains to the muddy muck of ponds. While our personal highs and lows have not been such a roller coaster recently, there have been moments where they felt that way.
Rich started his latest ketamine treatments in the middle May and went on into June. He had a small bout of pneumonia somewhere in the middle. Some antibiotics and six-day pack of medrol (steroids-lite), nebulizing over and over for months to come and we figure we’re good to go.
At the end of June, we reached a summit. Literally and figuratively. We set off for Maine by way of New Hampshire and Sturbridge Mass, singing in the car at the top of our lungs. Rich was at the wheel for the first time without another driver in the car to relieve him when he got tired. No more belt and suspenders… we were on our own.
Sturbridge has always been a place of peace for us. So many wonderful memories of family weekends… quiet winter mornings and hearty meals by the warmth of the fireside. Newborn animals in the spring, kiln fired pottery in the summer, the change of seasons and a chance to slow down. This was now just an overnight stop along the way as we traveled north, but, as always, it refreshed our spirits.
Rich’s feet were now renewed with ketamine and MMJ keeping the neuropathy at bay. The open road lay before us. The fog lifted from the White Mountains of New Hampshire as we drove, the peaks revealing themselves slowly through a haze. Adventure was in the air. Our plan for these next two days? Mountains… glorying in the mountains. We were not climbing and very few trails had our names on them.
As has been our need these last few years, we’ve made adjustments. On this day, we were traveling via train through the valley of the White Mountains and into the Notch. We would sit in a dome car, sheltered from the intermittent rain, and watch the waterfalls, gorges, woodlands and vistas through the windows of the vintage rail car. We would marvel as the walls of the notched stone closed in on either side before opening once more to the valley view below. We ate in the period dining car, reveling in the flavors and views.
The following day we found ourselves on the summit of the tallest mountain on the East Coast… Mt Washington. Here, the highest winds on the planet have been recorded. The old summit observatory and stage office displays a plaque on its exterior: 231 Miles Per Hour. We are awed to see this same building has thick chains that go up and over the roof in three places… secured into the granite to keep the roof, and the building, from flying away.
Despite our gear, we did not hike to this mountaintop. Rich’s feet and lungs, though so improved on his current regimen, are not up to the task. Instead we travel as others have for almost 150 years, we take the cog railway. Our fascination with trains has not prepared us for the wonder of this ride. It is not the view that captivates us. We can barely see through the clouds as we ascend; indeed, the fog itself rolls through the open windows of the car. It is the engineering that brings us such delight. What imagination!
With this help, we stand in the mist of the clouds at the top of our world. And we grin happily as if we had walked every step of the way. Success!
Our weekend continues and we’re ultimately back home, tired but content. We have not seen the stunning landscape that the telescopes promise at the top of Mount Washington as the clouds never rose enough and we could barely see three feet ahead. But the journey itself was the prize. This could never have happened within the three years since Rich’s diagnosis.
The wheezing, though, never quite went away from the pneumonia. We check in with our pulmo doctor who recommends, cautiously, prednisone. A small dose. Rich agrees… it is time to hit this with all we can and get it gone once and for all. And so once more our beneficial bane is back with all its accompanying side effects. The second day on this med and Rich has had enough. The doom and gloom of the adrenals is hitting and hitting hard.
The morning of the third day I leave what sounds like a rather hyperbolic message with the pulmo doctor. Quality of life is gone. We’re in the muck. She know us. She know we don’t exaggerate. We’re to stop prednisone immediately and to continue with the regimen of nebulizing. No need to wean off as the dose was so small and for such a short period of time. We’re relieved. Ready for that lotus to push through and blossom once more.
That relief is short lived. The two days later Rich is on his way to pick me up at the train station and his eyes are full of tears. He admits, it’s been a rough day. When we get home, the truth of that statement shows how inadequate it is.
Prednisone has many side effects and we’ve dealt with most. For whatever reason, it now manifested itself as it had never done before. As he drove down the street, Rich felt an overwhelming urge to open his car door and jump out into traffic in front of a moving truck. Again, his strength leaves me in awe.
The psychosis that prednisone can inflict has hit hard. He fought back and won. The doctors are stunned to hear this latest development. And yet, they nod. It’s a known problem. We spend the weekend on tenterhooks to keep this demon away.
By Sunday, in all ways, we can breathe a sigh of relief. This has passed us by. And so, we spent a weekend a month later celebrating Rich’s third year post-transplant. The roller coaster continues, but we honor our journey to date and give thanks for the life we live.
One of our celebrations found us in an apartment in Brooklyn attending class. Before us were a selection of mostly primary colored acrylic paints, some brushes, and canvases with dried lotus leaves applied. We spent the day mixing colors, some ending up the same color as the mud from which these lotuses grow, and applying the paints to our textured canvases. What a reflective and yet spirited adventure this was! We hang our masterpieces in our home proudly.
A few weeks later, we spend some time once again the mountains, this time in the Catskills of New York. Our weekend is one of appreciation. Appreciation of the journey we’re on, the light and life we’ve been given and the beauty around us.
Some of that beauty in the amazing meals we enjoy by chefs who know what they are doing. Some in the architecture of mansion along the Hudson that we visit. Most of the beauty we celebrate is that of artisans, certainly more skilled than ourselves, who show their work at a juried festival we attend.
On our way back to Long Island, we stop at the botanical garden in the Bronx where we enjoy the artistry of Chihuly and of nature in bloom. There we find, within the garden’s, ponds displays of lotus, rising through the murky water, from their roots in the muck of mud, to reveal the light and color to which we humans can only aspire to replicate. From the depths comes beauty that raises us up to the light.
Growing up, there were always kids in the streets…. Playing stickball, riding bikes, chalking out hopscotch boards on the sun warmed cement. In the winter, snowfall brought sleds to the few hills we could find on the flat Hempstead plains, later farmland, that our town was built upon. So the sumps that reclaimed our rainwater or the woods nestled in the curve of parkway exits provided us with the vertical we needed to get some good speed on our flexible flyers. Building forts, snowball fights… voices carrying in the wind. Memories.
We were a loose ragtag group that all lived in the development of houses on the edge of our town.
We were separated from the next little village over by the remains of Old Motor Parkway. Part of Vanderbilt’s 1908 motorway that criss-crossed Long Island, it was now a kid’s paradise of wooded thickets and fields with intriguing bits of cement and macadam that reflected its earlier use. It defined us.
Bordered by what were then considered busy roadways, we were insular as a group. We were on “that side of town” so otherwise removed from the rest of our hamlet until we were old enough to brave crossing Glen Cove Road. It was, therefore, of no surprise that any kid in our neighborhood could and would be called on to fill out a pick up team or invited on an adventure.
Rich and I grew up in that same neighborhood together.
Memories of knowing each other go back to his earliest cub scout days when he and my brother were in the same den and my mom one of the leaders. Billy and Rich grew up together, graduated high school together, and through our marriage, became family together. In 2014 as Rich left his stem cell cocoon, my brother began on his own series of cancer treatments complicated by the diabetes he had for forty years. Conversations that used to be “remember when we…” now became “what do you do when…” Billy’s treatment and its effects has never been my story to tell. His decisions and twists and turns on his path were never mine to relate. Forever, though, will his journey be entwined in ours.
As I lay awake at 3am those early post-hospital nights, finally back in our own home, my cell phone would ping a message “Are you awake? Can we talk?” and moments later I would answer my buzzing phone and we would be whispering to each other; shades of those times when one of us would tiptoe across the upstairs hall in the house growing up and sneak into the other’s bed to giggle and connive well after lights out… feeling like we’d pulled off a great coup in fooling our parents. The subject matter as we chatted was now more serious but the connection of those days when he would tease me by singing out to me “Missy-mou I love you” in a tangle of our Irish and Greek heritages, that connection was still there.
There came a time last year when physically we could not be together. With both Rich and Billy having compromised immune systems, the passing off of random bugs made it impossible. Nick and I tried but despite our best efforts to decontaminate ourselves on getting home from a visit, as if we’d been exposed to some sci-fi outbreak, Rich would end up in the hospital. It was a very difficult decision, but the consequences were too severe to allow. Our doctors had to finally put their collective feet down. But as Rich traveled some interesting roads to relieve his neuropathic pain, we always, at the end of each consult, discussed Billy’s own pain and his current treatments with our gurus to see if what we were about to explore could be viable for him. Always, his health and possible options were with us on our own journey and we’d share our findings.
As with many who find themselves in the world of severe and/or chronic illness, the concept of the “right” way to go, the “correct” treatment to take, the “proper” protocol to follow, is ambiguous. At first diagnosis you are overwhelmed. There are so many questions, there are so many days of anxious waiting, there are so many different answers. Finally, you connect yourself to a group of experts and you are then tasked to determine how much of a partner you will be with them. Do you question decisions or accept without hesitation? Do you research, explore, delve or leave it to their expertise? Do you conserve the energies you have or do you push past the ever-present fatigue? How much do you have to immerse yourself into your cancer life and how much of yourself can you continue to hold on to?
In reading forums and blogs these last few years, it’s been very apparent that there are as many ways to take on this illness as there are people who have been diagnosed. These decisions are very personal. Not just by agreement between caregiver and patient, but ultimately by the patient themselves. Many times have the discussions between Rich and I been lively as we weighed the options before us. Mostly we’ve been in total agreement, but as the one who has to deal directly with the consequences and effects of our decisions… there have been compromises for the sake of Rich’s comfort while balancing the needs of health… always, ultimately, he has had final say.
Have we sometimes pulled a few slightly unauthorized bits and pieces from our bag of magic tricks to get him the peace that he needed… absolutely! But overall, our group of gurus has been stellar in listening to what our concerns are and working with us for, not only the best possible outcome, but for the best possible quality of life. Are these decisions the same as someone else in the same situation would have made? Nope. Our journey is ours. We cannot speak of nor judge choices that others have made, only our own.
But having been on the other side of that mirror, we can understand the frustrations and pain of those who are bystanders with hearts firmly entrenched. It isn’t easy to see those you love struggle with these choices. As we have continually been lifted up and given strength by those who follow and support us, we have also been alongside and supporting those who are finding their path to health, recovering from treatment or, sadly, have left us too soon.
Names that are still on our list of guests here and elsewhere on social media belong to some who are now gone from this life except as cherished memories. The Greeks say “May their memory be eternal.” They live on within us all. One of those names on this list now belongs to my brother.
On November 13th of this year, he peacefully died in his sleep from complications of multiple myeloma and diabetes. While others have celebrated and given tribute to his life and career in music, Rich and I find ourselves celebrating the boy we both grew up with. When we rejoice with his music, we remember him singing at our wedding. When we give tribute to his career, we remember his “job” as uncle to our kids that he was so successful in achieving and the love and laughter he brought them. We mourn the loss of our cohort who shared so many memories with us both. No longer will there be those “remember?” moments from him. We now carry the light of his memory within us. We are the sum of the people who have touched our lives. That they are gone does not diminish that sum, but increases the light within us. May it always shine brightly.
In this season of lights, we celebrate life in all its glory and cherish the memories of days gone by. Peace.
I sing the body electric The armies of those I love engirth me and I engirth them
They will not let me off till I go with them, respond to them And discorrupt them, and charge them full with the charge of the soul.
Rich’s PET scans, CT scans, MRI’s, X-rays, all reminded me of the first line of this poem. The same line that Ray Bradbury, one of our favorite authors, used as the title of one of his short stories. The same title that the song from Fame used, the lyrics to which include:
I sing the body electric I glory in the glow of rebirth Creating my own tomorrow/When I shall embody the Earth
It’s always seemed fitting for Rich.
With the cancer related deaths of David Bowie and Alan Rickman among others in the entertainment industry this week came an avalanche of media reporting that all included the phrase “battle with cancer.” And so Walt Whitman’s armies spring to mind once again.
We haven’t felt our particular journey to be a battle but the attention to the phrase brought about some research that made us think. In retrospect, perhaps battle is not such a bad term at all. It has its roots in Old French bataille from Late Latin battualia. The dictionary gives it to mean “exercise of soldiers and gladiators in fighting and fencing.” Not perhaps appropriate. The Latin from the Germanic battuere means “beat” which is one of our goals. Modern definitions include combat, conflict, contend with, struggle, or engagement. OK.
There is certainly struggle with cancer and its treatment… another word that seems to pop up when talking about cancer. And while we’ve had our struggles, again, not a word that would immediately come to our minds. We’ve definitely been in conflict with cancer… it has different agendas than we do. And yes, we’ve engaged cancer in a type of combat by throwing whatever weapons we can find at it. But again, none of those would totally define how we choose to view the last two years. There are different types of battles… battle of encounter, battle of attrition, breakthrough, encirclement, envelopment, annihilation. Certainly chemo is one of attrition… we strive to have lesser losses than cancer. Breakthrough… yep. Get through those defenses to find the vulnerable flanks. Annihilation… yeah, that’s been our end goal from the get go. Destroy the basterd. Those definitions would again negate our viewpoint.
But just as there are multiple types and definitions of the word battle, there are also numerous ways to approach it. If we were required to battle, our view would be more like Jujutsu… the martial art whose name can be translated as “the art of giving way.” It uses the enemy’s energy against themselves and thereby neutralizing their threat. So many of the modern chemo cocktails do the same, as we’ve learned on our journey; using the DNA of the cancer cells to neutralize them. We strive always to continue forward, not retreating in the face of an obstacle, but searching for resolution, a way to slip past. Rich has plowed through, courageously in my opinion, the side effects of cancer and its treatment. Sometimes it’s been a fight to do so but overall, these words that define our journey as an aggression just don’t seem to fit.
We’ve striven, over the last two years, to look at this as a puzzle to be solved. A path with detours to take. A goal to reach by the best means possible. By treating it that way, we tried to eliminate the angst and tension that the word battle brings to mind. While not passive on our journey… everyone needs a good compass to guide them… we have attempted to meet the challenges head on and be as best prepared as possible. When we approach our journey this way, we leave ourselves open for the joy in life instead of a focus on the negative.
We can visualize this path we are on as one of the many wooded paths we’ve hiked and see the obstacles cancer has put in our way as the temporary moments they are… to be considered no more than a rise in the path, a boulder on its way elsewhere, a sudden stream from a quick rain. We navigate them and continue on and marvel at the light as it filters through the branches when the sun peeks through the clouds and we know we are where the universe means us to be. We fill our spirit with these images.
As we moved past the treatment phase and into the recovery, our journey was even less battle-like although our many trips to the hospital may not have seemed so. Before Rich went into the hospital for his last chemo marathon and the stem cell transplant, we went to the beach. Our first summer that we were dating was filled with sand and surf, a crowd of us filling the bus to either the north or south shores of Long Island. But this day, fatigue made it impossible to get to the water’s edge; instead we sat in the sun on the boardwalk and in the distance we could see the water’s tide moving in. The water would then pull back out but with each incoming wave, further up the sand the edge of the surf would come. Two steps forward, one step back, two steps forward… This movement of the water defined our experiences this past year. Like a tide coming in, we’ve had our forward movement, sometimes too slow to discern, but always there. A stumble back, temporarily, then stronger again forward. Progress.
In the dark of the night, when negativity can give way in a tired mind, the zen of the ocean’s heartbeat gives strength that we have been on the right path. There is a peace in that rhythm. That we will reach the point on the beach where we need to be. This has served us well. By releasing negativity and the tension of battle, we can use our reserves of strength to move on.
And moved on we have. With the new diet that we began in December has come new strength and clarity. We spent Christmas week in Rochester welcoming to this world our newest grandson and luxuriating in the frenzied activity of our other two. Surrounded by family, we reveled in the holidays. We made sure the Rich did not overdo but it was apparent that his energy levels have improved significantly. Our stem cell guru, who we saw before we took to the road, was thrilled with his progress. While acknowledging the results of the new diet, she said that many of her patients report that at a certain point in time after weaning off the corticosteroid, it seemed like a light switch turned back on. We rejoice in the evidence of this bane’s release. We still need to watch the gluten/fat/dairy/sugar involvement in our diet… there are swift and uncomfortable ramifications if we don’t… but it is good to have confirmation that prednisone’s grasp is gone. Fifty pounds of bloat have gone and we begin to see the end of the moon face as well. Our pulmonary doctor reports the best lung function testing that Rich has had in the last two years. His immunology is such that he can have the pneumonia shot. We pray 2016 will be pneumonia free. In the spring, our eighteen month old will begin his childhood inoculations all over again.
We welcomed in the new year with friends and looked forward with hope. As we rested on New Year’s Day, rejoicing that Rich was able to stay with us throughout the night, we discussed again our story.
What has defined us in the past and what would we want to define us in the future? Discovery through travel has been what we have missed the most. The planning as well as the journeys themselves are filled with fresh ideas and engagement with the expanded world around us.
And so, as has been one of our goals, we once again look towards seeing new places, meeting new people and learning new things. Debates continue as we consider the pros and cons of various travel destinations we have been dreaming of. While Ireland has been on the top of that list, there is so much to do there that requires more energy than Rich yet has.
In the end, we decide, with the help of a serendipitous Groupon, that a tour of Iceland is our next goal. The half days we’ve planned of mellow activities like lounging in thermal pools and one full day of touring in a comfy motor coach going from volcano to waterfall to geyser to rifts between tectonic plates seem perfect for our current state. The right mix of rest and mild trails and stunning landscape. A trip not too long in length, but enough. It will be a blessing to see other shores where those tides that empower us have landed.
We decide to listen to Mr Bradbury when he said, “Stuff your eyes with wonder, live as if you’d drop dead in ten seconds. See the world. It’s more fantastic than any dream made or paid for in factories.” If we should chance to have all the celestial requirements in alignment, perhaps we’ll experience the
Our limbo world has been a very curious thing. We were neither here nor there. We’ve rid ourselves of various meds and have seen slight improvements, but not as much as one would think. We’ve taken our baby steps and implemented what changes we could and saw some progress. But again, not as much as one would think. Each step forward seemed to have a few backwards just waiting for us which is to be expected but the travel has been slow and less than steady.
As we pondered lately what we would want our story to be, we felt there was something we were missing… a key element to a more significant improvement. Feet still swelling, fatigue still present, poopathon still rolling along. How are we going to manifest the future we envision for ourselves if we still reside in the half world of a patient patient?
As with most of our insights, we needed to gather data. What variables exist in our day that would make one day any better or worse than another? And so, Rich became my research project. Each night a discussion on how he felt with an analysis of food, activity, contact, sleep patterns… you name it, it was dissected. Google research began… reviews of our notes from doctor’s visits, in depth study of our calendar… all our collected information cross referenced. Ah! The romance of recovery! Such pillow talk!
And then one very, very odd event.
I had decided to make bacon jam for some holiday gifts. The bacon was cooked, the fat rendered, the onions caramelized. The pure maple syrup, brown sugar, pepper and hot sauce were all blended together. It was time to slow cook it all into a compote. Rich was on crock pot watch. And by the time I got home from work, we had an excellent batch of bacon charcoal. Black, crumbly, and yet, tar-like charcoal. Our guy had reported that it had burnt… but for some reason, he refused to turn off the crock pot. His reasoning was that I hadn’t told him to. So for an additional seven hours after he felt it had burnt, it continued with heat, all the while the smell was bothering him… but still, he would not turn off the crock pot.
On a number of levels, this was disturbing. And required some consideration. As a type II diabetic, I know that high blood sugar levels can make it hard for me to concentrate and my thought processes get pretty fuzzy. We know Rich’s blood levels are elevated from the prednisone but for some reason, he can’t stop snacking on carboliciousness even though his body doesn’t really give a shit as to why the glucose blood work is high. Doesn’t matter that it’s ‘cuz of his meds, side effects still present themselves and yet, he resists any attempts to lower his sugar intake. This 350 degrees of Kevin Bacon was our turning point.
Since we’ve started this journey, Rich’s eating habits have changed. First, we had to eliminate certain foods that would irritate his cancerous stomach ulcerations and foods that could cause nausea. The chance of a fatal perforation was a very real threat so care had to be taken. As chemo continued, tastes and diet changed once again. The medications prior to the stem cell transplant to protect his stomach and esophagus led us in other directions yet again. The early months post-transplant had its dietary restrictions. This past year with its prednisone intensity brought a whole slew of carb laden cravings followed by a loss of appetite. Stomach discomfort and the continual poopathon seemed to beg for comfort foods. Peripheral neuropathy reacts well to B vitamins… so, sure, add in those yeasty foods. The guy who had snacked on brussel sprouts for decades was long gone.
But looking at the whole picture… activity (or lack thereof), food, medication, symptoms, sleep patterns…again, as a whole instead of bits and pieces, the magic of google began to divulge some possibilities. The discussions on irritable bowel syndrome seemed to have the most significance. Interestingly enough, joint pain, a daily complaint, is a symptom.
One of the many things I’m thankful for is that Rich is, for the most part, open trying whatever craziness I propose. But sometimes it’s all in the timing. While the efforts to get him to move towards more veggies and less carbs has been met with resistance and some half-hearted attempts during our time on this path, following our creation of bacon charcoal he was ready for a change. Sometimes our own odd behavior will force us to rethink and revamp. This was one such time.
Based on the IBS diet, carbs are reduced; gluten and wheat products eliminated or brought to a significant decrease. Same with dairy. Cashews were replaced with almonds. Simple proteins and fresh veggies are our menu along with the elimination of condiments with their hidden sugars and salts. Manuka honey, which had such magical properties and got us through some tough times with stomach pain, is now verboten. Rooibus tea replaces coffee to eliminate the caffeine.
The results are almost instantaneous. Each day there is more energy, more clarity of thought, less bloating, less swelling. At the end of the week, we’re stunned that the relatively small changes that we’ve made have had such an impact in such a short period of time. Just like his allergy shots from the ‘70’s and his childhood vaccinations are no longer effective, what his foods his body tolerates has also been reset. This is such a powerful change.
The story we want to tell of our lives is ready to be manifest. If these changes continue, if our new year leaves this past year of pneumonia and prednisone and mental fog behind, if we can truly begin to set ourselves onto a new path to create our new future, then we can be well satisfied. The possibilities we could only dream about can become our new reality.
Leonardo da Vinci, a man that knew a thing or two, said “It had long since come to my attention that people of accomplishment rarely sat back and let things happen to them. They went out and happened to things.” By once again taking control of our future, we’re ready to go out and happen to things.
As we settled down for the night thinking about our plans, the old roar and rumble of Rich’s stomach has now been quieted. Luckily, his snores have continued to serenade me at night.
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!!!
Our 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.