Waiting For The Train

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.

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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.

Simple!

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!

Don’t fight forces, use them.

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As we drove out of Belfast for the last time six months ago, we passed under a sculpture of a sphere within a sphere. Two geodesic wire creations, one nestled within the other. The guys had gotten waylaid on their way to park the car as we checked into our hotel and this was a landmark that they recognized. I couldn’t help but think what that visionary, designer of the geodesic dome, Buckminster Fuller would have thought. His words are the title of this post. Smart man, B.

That the sculpture, named RISE, represents a new chapter and seems to be apropos today as well.

When Rich first went through chemo in 2004, he was advised by an oncology nurse to keep moving… whatever he could do, keep moving. She went on to explain that he would feel better and could help with side effects.

As always, Rich took this to heart and, once he wasn’t able to work any longer, he walked. He walked the trails at our nearby park as the neuropathy took hold and he couldn’t feel his feet. He kept walking those paths until the numbness was up to his knees. He said, “It’s not very busy at the park when I go. If I fell, I don’t know how I could get help!” So, he began walking our neighborhood instead. When that got to be too tough, he walked our small garden. He walked laps throughout the house. He kept walking.

When we began our journey again ten years later, he walked. He walked from the train to the office. When again he had to stop working, he continued his walks at home. Whenever in the hospital, we walked the halls. The nurse had said to keep moving and move he did.

When we entered the stem cell isolation unit, he walked, counting his laps and trying to improve each day. For four weeks we strolled up and down the hallway within a hallway, marking our pace and distance. In all that time, one day he missed walking. One day, when his counts were the lowest and his stomach was protesting the assault of the beneficial poisons. But always he remembered… keep moving. With a shaky hand, he reached for the two bottles of ensure that were on his meal trays and began arm exercises using those bottles as weights. Keep moving.

That has been his way throughout our journey.

Movement will help. Push past the fatigue and fog and keep moving. Leg lifts in the recliner, exercises with a walker, using household objects to work the arms.

And then congestive heart failure comes to roost and he’s limited. Limited in what he can lift, push, pull, carry. Inclines can’t be traversed. Care to be taken.

The universe has changed the rules and accepting these changes is hard. The ramifications of pushing past is no longer simply a day of rest and recuperation. His heart isn’t cooperating. After overdoing, his blood pressure drops. Less oxygen to the brain leads to confusion, slurred words, frustration, fluctuations in mood. Anyone who didn’t know better, would think he was drunk. Days are needed to recuperate.

It took us a while to put two and two together on this. At first we thought it was the meds as these episodes seemed to happen whenever there was a change in dosage. What really seems to be the case, is that the change in dosage gave Rich a bit of a boost which gave him a false sense of healing. So, he walked. And lifted. And had these episodes of ataxia.

For close to six months, lifting more than he should or exerting himself with exercise that formerly would have done more than send him for a nap, now had him on a different kind of roller coaster… one that set our house into chaos.

The hardest part of this carnival ride was for Rich to accept limitations. Our conversations with our gurus seemed to always include discussions on fatigue. Rich would bring up his disappointment in the backward progress of his energy levels. And what we would experience if he did too much. Like many a four-year-old, he tested his boundaries and not often to a good effect. Our conversations at home were like nagging on my end and whining at his. This isn’t the way we expected our lives to be although, honestly, the man IS still technically a toddler! But how to put a grown man in time-out?

With any disease or injury that has lasting effects, there is a mourning period. No longer is the person who they once were. Physically, mentally, emotionally, there are changes. And the mourning is not just limited to the patient but encompasses all who know and love them. The trick is to not let this mourning dictate the future. Our wise man of the geodesic domes Buckminster Fuller said, “You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete.” It was time for that change. It was time to act for that change. As always, it was for us to change and fit into the existing reality in a way that would work for us.

To that end, Rich and I puzzled the differences over the past year. We looked at his energy camping with Jake in July… hiking in Ireland in September. The decrease in abilities for distance. The walking had stopped. We looked at the episodes of seeming ataxia. We tried to figure out causes…. And solutions. How to make that change we wanted actually to happen?

This month something clicked. One year since the idea of congestive heart failure was brought up, it was like a light switch went off.

When we visited the heart failure guru, we were thrilled by her comments on Rich’s progress; he’s now maximized and optimized on his medications. He is tolerating them well. His kidney function is still off but stable. All what she and we hoped for. And yet, she had concerns. His fatigue. It was time to address it.

First, she suggested we see a sleep specialist and set up an appointment to see if Rich had what is called central apnea. Unlike obstructive apnea, this is a failure of the brain to transmit the proper signals to breathing muscles. It literally forgets to say “breathe!” While this type of sleep apnea is uncommon as compared to obstructive apnea, it is a risk for those with congestive heart failure. The symptoms seem to fit. She sends a request for an appointment to the proper department.

Next up, we discussed a more interventional solution. On the current medications, Rich’s ejection fraction (EF) has improved to where it is now close to the 40% it was and has been following his 2004 chemo. The cut-off for an implanted defibrillator is 35% and we are well past that. Now a normal EF is generally 65%; meaning 65% of the blood in the left ventricle is pushed out with each heartbeat. Below 35%, the heart needs some internal help.

Our heart failure guru feels that Rich may benefit from, not a defibrillator as originally had been discussed, but a pacemaker. That extra boost would help him maintain his energy. Other patients like him have. To see if it would be an effective protocol, we’re advised to have a CPET… a cardio pulmonary exercise test. This, unlike a stress test, would be on a stationary bicycle and would monitor, not just his heart and breathing rates, but the amount of oxygen his body, his muscles, are using and how much CO2 he is producing. Enzymes, mitochondria, heart, valves, lungs… the data that it can gather is stunning. And will answer questions… many more than we’ve had answers to before. And all from a simple bike ride.

And, she suggested, that if we were to go with a pacemaker, if the test indicated it would be helpful, then we should have the coil wiring implanted at the same time as well that would be viable for a defibrillator… in case in ten years or so it may be needed, it would be a simpler procedure just to switch out the box.

Ten years. Ten years. TEN! Instead of the heart transplant she first discussed with us, now we’re talking a quick change of a small box… if necessary. Y’know that stinging feeling you get when tears are imminent but you’re trying to keep it all in. Yeah, that. Suddenly, we’re talking a whole new outlook.

But first, a little reality hits. Rich is buoyed by the doctor’s assessment and, in doing so, goes overboard on activities the next day. By the time I get home, we’re in ataxialand. And we’re in deep. There is a double-edged sword to this; on one side, anything I say he will forget and on the other, anything I say he will forget. If marriage is a series of compromises, then sometimes we all bite our lip and are careful in our words. But to paraphrase the question of that tree in the woods, if a wife yells and the husband forgets it, does it exist? This could be a very cleansing opportunity!

Do we take advantage of this? We do. But the yelling is of truths and frustrations and despite the volume, they are heard. Yelling becomes talking and the talking builds from the truths and the frustrations that were said. And time passes and we keep talking. We revisit activities he has enjoyed in the past and discuss how to make them fit his current reality. We talk about possibilities. We talk about patience. We talk about us. Whether this is the pivotal moment or other factors are at play, acceptance is in the house. It was a long night.

Two weeks have passed without an episode. Rich has become active in the garden. Small tasks that are within his current wheelhouse are being done daily. He is more in tune with when he is reaching the tipping point. He takes those moments to stop and rest. Due to a knee injury he can’t take the CPET testing yet. He also delays his cardio rehab that was scheduled to begin next week. Setbacks but otherwise making progress.

Setbacks. I get home from work after writing these words and again we’re in the land of ataxia. This time we surmise it’s carrying a heavy box from Amazon and some solo food shopping the associated bags that weigh more than they should. BP drops, wonkiness rises. It’s another long night. But it’s just a blip… it doesn’t feel like it but we learn from it and move on. Keep moving.

So as the weather begins to warm and the days are noticeably longer, as his knee begins to heal, walking will happen again. In preparation, we work to schedule ketamine infusions to stem the neuropathy pain that is beginning again. We’re getting ready. The park is waiting.

“How often I found where I should be going only by setting out for somewhere else.” ~ BF

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 personal 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.

Adding Insult to Injury

In the month since Rich’s hospital discharge, we’ve met again with all our specialists; this time in an outpatient setting. The appointments set up prior to our trip to the ER …set up by chance… become perfectly aligned for follow-up. One by one, each one gives us their opinion on where we are and what direction we should go.

First up is our PET/CT scan. Once more Rich is drinking radioactive goop and getting injected with a lead protected syringe that is delivered in a lead box. Biohazards galore. We’re thankful that this test has been approved. For the first fourteen years living with cancer, our insurance has never denied a single test or procedure. Then last year we were thrown for a loop… No PET scan. We were informed that, despite a peer-to-peer review with our stem cell guru, Rich was eligible for a CT scan only. The near to continuous pneumonia bouts that have been our life since the holidays four months ago is the blessing that has brought this change. It is only a few days after coming home from the latest stay in the hospital hospital that we have the PET/CT scan. It is sure to light up the lungs a bit as there is still a lingering pneumonia, but the gurus all determine that it’s ok to have the test.

We have also brought new specialists into our world. In December, we visited, at our pulmonologist’s request, an allergist/immunologist. We thought that perhaps, like his childhood vaccines, the stem cell may have reset and lost the efficacy of the allergy shots he received in the 1980’s. The test showed those shots were still doing their job. These infections were not allergy related. As an immunologist, the doctor also ran a panel to check Rich’s immunology levels. Antibodies that are known as immunoglobulin, are proteins that are used by a well-functioning immune system to ward off bacteria and viruses. You know, all those that we’ve been having difficulties with for so long. She said, in January, that Rich’s antibodies are where you would expect them to be. No worries.

But now, a week after our hospital departure, as we’re in consult once again in her office, we know from the recent hospital tests and the accompanying Immunoglobulin (IgA) he received in the hospital that his levels at the time of admittance last month were low. This latest panel she takes will help us determine Rich’s reaction to the recent IgA infusion and the worth of therapy. IgA, is, not coincidentally, the antibodies that help protect the body’s mucosa. It’s no wonder that infections manifest in the lungs. She suggests we wait three months and see her again to check the IgA levels again. The infusions as therapy might be an option. She says “You are a mystery!”

Directly from the immunologist, we go to see our pulmonologist. We first were introduced to this practice in the summer of 2014… four years ago. Rich was in the middle of his pre-transplant chemo and we found ourselves in the hospital with a pneumonia diagnosis. Dr Kz introduced himself to us and over the course of our journey, we’ve welcomed his advice as he is not one to limit his concerns regarding a patient’s health to his specialty. He looks at the overall patient and can see gains and losses when he walks into the room.

One of our favorite memories of him came about a year after the transplant… 2015 being the year of pulmonology. It seemed like we were in the hospital every month with some kind of lung infection… PCP, RSV , hMPV as well as the generic viral, fungal, or bacterial pneumonias and infections. Rich was not progressing well. Our Dr Kz, at one point in a hospitalization, advised to be patient. In a rather long discourse, he advised sticking with the Robitussin instead of opting for the cough med with codeine. He admonished us that the codeine would slow the lungs from clearing. “Use codeine only when the pain is unbearable.” He explained the why of it in intense detail. We agreed.

Trying to stick to his plan, we found we had to resort to codeine in the middle of the night. Knowing we would have to wait for the pharmacy to fill the prescription and that at night could take a significant time, Rich asked me to give him a dose of the meds from my bag. Seeing the pain in his face as he coughed, I gave him the dose. His conscience must have been on duty… no sooner did I get into my recliner than a team rushed into our room. Apparently, his guilt manifested as wonky readings on all the leads sticky taped to his body!

Come morning, the codeine unrecorded, Dr Kz comes checks Rich and finds him much improved. He credits the Robitussin protocol and launches once again into his speech on its benefits and the why of it.

Finally at the end, he says to Rich, “You only had Robitussin right?”

Rich: Nope

Dr Kz: Bastard.

It had been two years since we had seen him… he had sprung us from the ER when Rich was about to be admitted for the flu. Now he walked into Rich’s hospital room a month ago, looked at Rich with a smile and shook his head. “You look better than I expected from reading the ER reports. I don’t understand you!”

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The directness of this doctor gives us strength. His compassion and willingness to work with us is a common trait with his office partner Dr J-R. She tells us, when we see here, that Dr Kz joked with her, “I gave him to you two years ago. What did you do to him?!”
I mention to her that he was supportive of us going home as soon as advisable but, when it came time for us to leave, he seemed skeptical. “Dr Kz was scared with this admittance. He wanted you home, but at the same time, the reports from the ER and Rich’s numbers were extreme. He hoped we were all making the right decision for you to leave, to come off the vancomycin.” The first few days, we wondered if it was the right decision, too!

She also advises that, as we know she suspected, this appears to be infection by way of cardiac issues. Congestive Heart Failure. Of all the reasons for the continual infections, she says this would be the most treatable and could be considered curable. Her explanation is that the congestion… brought on by his heart issues which were in turn brought on by chemo… builds up and it is then that the fluid builds up in amd around his lungs where an opportunistic bug makes its home. The fluid also bloats Rich’s belly which restricts the amount of room his lungs have to take a deep breath. Treat the CHF and the rest will take care of itself. Lasix as needed is prescribed.

Part of that is in direct contradiction to the immunologist, but it makes us think perhaps this is a combined issue.

Another week goes by and we’re meeting up with the cardiologist. While we were in the hospital, the ejection fraction of Rich’s heart was further depressed… lower than his average. Both doctors seen last week brought up that problem, so we’re anxious to see his take on things. We’re first scheduled for an echocardiogram followed by an EKG. Surprisingly, our consult is short. The tests indicate Rich’s heart function is indeed not exactly status quo to where it has been throughout this journey, but is what he would expect given the recent events. He tells us that he wants to reconvene after three months, that Rich’s heart needs to “recover from this insult.” There has been an injury and it needs to resolve. We ask to be more proactive, we ask that Rich be prescribed cardiac rehab. Approved. Continue with the Lasix as needed, he says. Further tweaking of meds will be reviewed when we meet again. We always have to keep his liver and kidney function, particularly with CHF, in mind. Patience.

One week more and we see our stem cell guru. By now we have as many answers as we could have wished for. Blood work is taken and vitals checked. As we have been told by each of the doctors during these weeks, the PET scan not only shows no evidence of disease but a few spots that everyone was watching for inflammation have resolved. We breathe a sigh of relief. So many symptoms this year are part of the list of NHL. We’re glad to have a recurrance off our list of concerns.

At this point in our journey, this is the shortest stem cell consult of all. In many ways, we have moved forward into the realm of other specialists for the issues chemo have brought. We will meet for only for 6-month follow-ups and testing. The consult ends with hugs and a reminder of the Celebration of Life dinner. It will be good to see our fellow HSCT patients and the angels in scrubs who guided us through an incredible month in August of 2014 and celebrate living our new lives.

With one month down from our date in the ER, we have two more to go to see where we stand. But we’ve been contacted by the rehab group and this next month will see the start of evaluation and rehabilitation with a staff that has experience and certification for working with cardiac and pulmonary patients.

The recovery from this latest insult, this injury, this one worse than any before, has been understandably slow. Rich says it feels like he’s taken a jump back three years. Pneumonia in and of itself is not a quick bounce-back. Rich’s condition in the ER was not like any ER admittance before. Three years ago, Rich had his doubts about coming through one of his infection hospitalizations. This time it was my turn to have my doubts while he was in the ER. We’re blessed that deep down is a strength that pulls him through. We’re blessed with our family and our friends who are family to us that support us and are with us along the way and especially there when we need them most. We’re blessed that those who partner with us in the health care system are indeed partners and listen and voice their truth and guide us well.

Well heck, we’re blessed!

To Be Like A Lotus

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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.

Music blasting, open road, singing at the top or our lungs

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!

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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.

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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.

And for that reason we continually celebrate.

Rebirth.

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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.”

I Sing the Body Electric

Walt Whitman wrote in his poem:

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.

1888842_10151973357547824_8882923113914141903_oAs 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.

1540368_10152866330392824_7866573503062585462_oAnd 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 Northern Lights and charge our souls.

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.

Longest. Ride. Ever.

About twenty years ago, our family found ourselves at Hershey Park. While the older kids went on the roller coasters, I went with Nick on all the rides more appropriate for the three year old he was then. One of which was a kiddie airplane ride where you could control the height of the little plane you sat in as it went round and round. Nick and I settled into our mini two seater and, with big smiles, waited for the ride to start. When it did, I realized that Nick, who didn’t like the motion, had slithered down by my feet. To anyone watching, it looked like I was the only adult on this embarrassingly small ride. There was nothing to do but practice my Queen Elizabeth wave and smile as we went round and round. Every time I tried to make the plane go higher, Nick would start screaming at me as he sat scrunched down by my toes and I had to lower it back to a mere hover. So there I sat, two inches above the ground, a grown woman sitting apparently alone in a vehicle meant for a child no higher than three feet tall and going nowhere really really slowly… waving. Rich, meanwhile was gleefully snapping photos. This was the Longest. Ride. Ever.

Right about now, Rich and I feel like we’re going round and round on the longest ride ever and sometimes feeling just as ridiculous with our precautions as I did that day on that little plane and getting nowhere reeeeeally slowly. We’ve been trying to make changes but it’s hard to think of yourself as a non-patient when every time you begin to increase your activity levels, you end up back in the ER. As we are finding, “Progress is not accomplished in one stage.” Victor Hugo was right when he wrote that.

And we always seem to have a crisis moment after those doctors give us a big thumbs up. After our round of stem-cell-birthday doctor appointments August 27th, we began to look ahead to our F*ck Cancer celebration scheduled for Labor Day weekend. The kids were all coming down from Rochester with lots of family and friends joining in. We were a week away! We finalized our menu and went over the details and started up the stairs to bed. Near the top of the stairs, in seemingly slow motion, Rich began to fall, collapsing in on himself. Shaking, he grabbed the railing and, with me close behind, made it into our room and onto our bed.

Out of nowhere, his temp was 102, his O2 levels 82. Body aches were starting up. Suddenly his breathing was the full symphonic again. The guidelines we have dictate if a temp of 101 or more is not resolved with Tylenol for more than 20 minutes at a time, then we need to go to the ER. All temps should be reported. The O2 levels were problematic. A cough is brewing. If we reported this to the on-call doctor, they would advise to go to the ER. Rich was refusing, putting me in the middle. So, instead of a phone call, it was time for some fast footwork.

First, ignore the phone. Then begin some regimens for these symptoms. Tylenol, Nebulizer, and luckily, a supply of the antibiotic Levaquin is on hand. Shortly, the O2 levels are back up, the temp is normal and we’re hoping the antibiotic is working its magic. We’ll see how the night goes. In the morning, Rich’s temp is still normal. Throughout the day, his O2 levels vary which doesn’t make me comfortable, but he pleads to stay home. And I don’t blame him. The lack of temp indicates Levaquin was the way to go… this is a bacterial something or other that was brewing. With luck, we’ve caught it in time. We spend Sunday resting from the long watchful night and monitoring those oxygen levels that can’t stay in line.

By Monday, there is significant improvement… O2 remains a steady near-normal. We call the pulmonary doctor who isn’t happy we didn’t phone over the weekend but is in accord with what we dispensed and understands our need to stay out of the ER. We agree to notify her with any negative changes.

Now’s the hard part… keeping Rich rested so he’s well for the party. And thankfully he is. “To succeed, planning alone is insufficient. One must improvise as well,” said Issac Asimov, one of our favorite authors. So we improvise by bringing Rich’s Ikea chair (Poang!!!) and ottoman into the garden for him to relax in. Like a pasha, everyone will come to him for the bulk of the day…to greet his guests by getting up and down or standing for long periods couldn’t be an option… he’d be down for the count before the appetizers were done. And our plan works. Most of the day was spent in the chair but as the sun began to settle down, Rich then was able to get up and mingle, stopping at various tables to sit and chat. He only stepped away from the party for his timed nebulizer treatments. It was a triumph for him to be able to spend the entire day surrounded by so many friends and family, all of us celebrating that he’s in remission. Celebrating with gratitude for the support of everyone that helped us with love through the darkest of times and to find joy in the lightest. Those who were there in spirit followed us as well. It was magical.

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On Monday, Labor Day, we rang the farewell bells as we watched our kids drive off to their homes in Rochester. The house now quiet, we relaxed and enjoyed the aftermath of a wonderful weekend; reliving all the special moments, unwilling to let it end.

As we had for the past week, we continued to sleep on the main floor, still hesitant to try the stairs too soon. We settled in for the evening. Rich’s cough, though, kept tickling his throat. His side mildly sore from a week of coughing, the muscle pulled from the exertions. Overall, not problematic but annoying. Yet in an instant his body is in conflict… a cough and a sneeze explode at the same time and it’s as if his rib is physically torn apart. He screams in agony, holding his side as he falls out of his chair from the force.

Immediately, Nick and I rush to get him to the ER, calling the doctors on our way. Once there, like that little plane so long ago, the ER moves slowly on holiday weekends. After what seems an interminable wait, Rich gets a CT scan… riding off on the gurney smiling and waving goodbye to me like Queen Elizabeth. Like me on that stupid plane. As night once more becomes a new day, we get the results: lungs clear…rib unbroken… muscle torn. Sent home with oxycodone for the pain and valium to relax the muscle and advised to see our doctor within 24 hours. Thankfully: discharged. We feel reprieved.

The following day we visit the pulmonary doctor. She confirms the finding on the radiologist’s report and sends us home with some cough medicine with codeine to use in a few days when the ER meds run out. Calm the muscle, let it heal. Happy the lungs are clear.

Two weeks later, there’s still some pain… gotta be careful not to use core muscles for now… but overall healing. Cough for the most part is gone. Creeps in when Rich gets tired, but mostly gone.

So we continue to make plans. This time we revisit one we had to bypass in the spring when Rich was not up to the event… seeing the new show “Something Rotten” on Broadway. What better time to go than Broadway week? We forgo dinner in the city… that would make the night too long right now. Rich instead decides we’ll walk to and from Penn Station… it’s a beautiful night, just right for a slow stroll.

And it works. Tons of laughs, lots of fun. Great night out.

And we pay for it the next day. Exhaustion, swollen legs, foot pain and that pesky rib acts up. This on top of the continuing prednisone withdrawal and all the baggage that it brings with it.

Which all begs the question, how do we get out of this patient mode? Part of it is physical. But as the saying goes, a body in motion stays in motion – A body at rest stays at rest. We come up with a plan to create a routine of small tasks that will make the house run smoother and get our non-patient out of patient mode… work the mind and body.

The harder part is the mental. How do you stop thinking of yourself as a patient when every time you try, albeit by going unintentionally overboard, it sets you back? The frustration is overwhelming. We feel lost.

Baby steps seems to be the key. And that’s a hard way to proceed when you really haven’t done baby steps in sixty years. It is dispiriting when so many attempts create such havoc, but we have to learn from each one that the amount of extra effort needs to be very carefully calculated. And that there will be setbacks, but we can’t let them stop us in our tracks. One of Rich’s favorite pastimes is cooking. With the restrictions he’s had and the exhaustion, both mental and physical that the medications bring, he’s not had many opportunities this past year. But with Mr. Asimov’s words in our head, we make a plan to find interesting simple new recipes and Rich will go grocery shopping each day for fresh foods to fill the ingredient requirements. His day will be filled with preparing dinner with rests in between so as not to overdo.

For two days, we have excellent results and delicious meals. And then a fever flares again. We sit and look at each other. What to do? It’s not a huge temp… it just hovers above the “call it in” level. We decide to ignore it. It responds to Tylenol… we wait til morning and discover then the fever is gone.

We discuss how, pre-cancer, this temp wouldn’t even be a blip on the screen. Rich probably wouldn’t have even taken his temp but brushed off the chills he felt as a result of a rather cold marketplace. We discuss how our need to respond has changed with each successive fever over the last nine months. This time, there is no change in breathing or oxygen levels. The only medication needed was a couple of Tylenol… no nebulizers, no ER visit. In the grand scheme of things, this is an indication of some very significant improvement! We begin to move mentally out of patient mode. We’ll need to keep aware of body changes that could be problematic but decide that with caution, we can analyze these changes and review them with a fresh perspective.

The theologian Martin Luther wrote a commentary on the New Testament’s Epistle to the Romans. This book in the bible is full of focus on spirit… grace, transformation and salvation… a fitting one for our current place on our journey. Luther’s commentary says “To progress is always to begin always to begin again.” And so, as always, we begin to begin again… towards grace, transformation and salvation.

Renewal.