Use What Exists

The Road is Now Calling, And I Must Away.

I wrote this on Friday night, July 30^th 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 30^th, 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

I bid you all a very fond farewell

(Billy Boyd, The Last Goodbye)

Delicious Ambiguity

As America enters the final days of the 2020 election, as we enter the eighth month of the Covid19 pandemic, we all face uncertainty. With the addition of the CardioMem last week, we thought our days of the uncertainty of Rich’s health were at an end. This little paperclip-like device was implanted in my cyborg’s pulmonary artery. There it would, via a talking pillow, send a report to the staff at the heart failure clinic. Every day, we’ve received a call to let us know how we were doing on that fine line of fluid retention. Drink more water? Take a water pill? What a wonderful tool to have in our arsenal! The guessing game would be over and done. We have a team behind us getting solid data every day.

Yesterday morning – was it only yesterday? – Rich was advised to take a water pill. At noon he was feeling well but tired and the water pill seemed to be doing its job. When I checked on him at 4pm, his tongue seemed thick and his words hard to articulate. We checked his blood pressure and it was on the mildly low side. But all the other side effects he’s experienced to date were there… unsteady on his feet, cloudy thinking, swings of emotions and that major tell, the struggle to carefully pronounce words with a tongue that didn’t seem to want to cooperate.

We called our team and the singing, chatty pillow was brought down to take another reading. The nurse practitioner called us back. The arterial pressure reading went from a high in the morning of 23 to a current low of 13. That water pill packed a punch! He sipped water as advised and there was a modest rise in his blood pressure. The team asked Rich a series of questions and told us to go to the ER. They were concerned it may have been another TIA. They didn’t like his difficulty with talking.

In these days of Covid, I’m sent home once I get Rich done with his registration intake at the hospital. It’s frustrating to walk away from the hospital, leaving Rich behind. These episodes are not remembered by him. There is a vulnerability to that amnesia. It’s hard to make solo decisions about your treatment when you don’t remember why you are there. The ER calls me to get answers to their questions. He doesn’t know what went on.

At home, I sit with my phone, waiting for a call with an update. I jump at each notification that comes on the patient portal, hoping for some information that will give me an idea where we’re going. More often than not, it’s bloodwork. Once again, Rich tests negative for Covid. Another ping of my phone. They’ve uploaded his medications list. Ping. Dx: Dysphasia. That speech difficulty.

And I sit waiting. I wait to call, wanting test results or consults to be done before I tap the number of the ER desk in my contacts list. The nurses are patient with my phoning, but there isn’t much information. They tell me he will be in overnight for observation. Rich texts me with small updates. An MRI is ordered. He’s had the CT scan. I keep watch on the patient portal. He texts he’s hungry. I text him to ask someone to get him a dinner. At some point, we both fall asleep; miles apart.

Gilda Radner, who knew a thing or two about cancer and chemo and dealing with illness, wrote “I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.
Delicious Ambiguity.”

While we hope for answers to why these episodes happen and what triggers can we avoid, I wonder if we’ll know. Or if we will need to learn to live and find joy with this particular delicious ambiguity.

Come Home ‘Cause I’ve Been Waiting For You For So Long

Funny that my last post ended with talking about planning meals. On Friday (as Rich says, “Why always Fridays?”) I came down from my remote office for lunch and found Rich leaning forward fast asleep. While napping is innocuous, his position was not. Any time I see that posture, it’s a good indicator that we’re in for a bit of a ride.

I woke him up and we chatted for a bit about lunch and then segued onto a discussion on our plans for dinner. As we got up to check the freezer and make some decisions, Rich was a little off balance. It happens. So, we wait for his BP to stabilize from the change in altitude. Called orthostatic hypotension or positional hypotension, Rich is used to this and generally will take a moment when getting up from a chair to allow everything to equalize. Walking behind him as we made our way through the house, I could see he was lightly touching the furniture he passed to orient himself upright. Not a good sign.

Before I knew it, his eyes rolled back, and he began to crumble into himself. Syncope. While trying to catch him, I also pushed him up against the nearby bookcases to help me keep him from hitting sharp corners until I could get myself under his arm properly to support him. With the canon of Ray Bradbury practically up his nose and his nose on the shelf pretty much all that was keeping him from crashing down, I kept saying his name louder and louder to bring him back to consciousness. He’s not a small guy and I needed more than some dead weight to keep him from some serious damage. In his confusion when he began to become aware again, he kept saying he was fine. Fine. Nose hooked onto a bookshelf filled with the yellowing seventy-five cent mass markets of Bradbury’s nostalgic science fiction. Truthfully, there are worse places to be.

Once settled, Rich’s blood pressure seemed elusive. Finally, some readings start to show we’re in low blood pressure territory again. Since his last hospitalization, we’ve had a few of these episodes but with some additional fluids and rest, we’ve been able to bring it back up to the norm. Now was not one of those times. When we finally got a reading, it was 78/45. A call to the heart failure doctor’s office confirmed a trip to the ER was needed.

Once again, with covid protocols in place, I dropped Rich off in a way that felt very much like dropping off some dry cleaning… albeit some with some pesky stains that needed special attention.

As they ran tests, they inverted Rich to keep his brain well supplied with blood. Through some trial and error to get needed data, they took his BP lying down, sitting up and standing. Lying down and standing up our guy was in normal range. But sitting, SITTING, his BP dropped to a low of 70/43. None of this made any kind of sense.

Saturday morning, they ran some blood work specific to heart related issues. These were tests that we’ve never seen before, but we do know that the doctors were looking for any kind of infections that would preclude surgery. Because it looks like Rich’s CRT-D implantation into the Borg collective was getting moved up.

In addition to this expected device, we’re also advised that there is another device that is being considered in addition to the pacemaker/defibrillator. This one is called a Cardiomem. This little piece of magic measures pressure in and around the heart to help control medications having to do with the congestive part of congestive heart failure. By measuring that pressure, it is measuring the indication of fluid buildup before our patient has any sense of water retention or bloating. As it’s constantly monitoring and in communication with the health care community, we can be advised to begin taking lasix to forestall any buildup that can be problematic.

Our consults are via phone; Rich and the doctors in his hospital room on one end, and me at home on the other. The waiting, never my strong suit, is maddening. I’m allowed to visit now that some covid restrictions are lifted. I wait on a long line of visitors. My temperature is taken. A timed visitor badge is given to me. I’m told my visit is limited to two hours.

I’m supposed to check in at the nurse’s station in Rich’s unit. I bypass that protocol, I really don’t want a record of when I came in. I stay for eight hours. At one point, six hours have passed, and I ask Rich’s nurse when she will kick me out. She looks at me and meets my eyes. “I don’t think you want to ask me that.” Got it.

At the end of hospital-wide visiting hours, I leave. There will be no overnight stays yet. We had hoped a doctor would be stopping by while I was there, but the room has been quiet as we binged our current TV show. We treasure the time.

Sunday morning the latest news is that electrophysiology is working to schedule Rich for his CRT-D device on Monday at the earliest. After I hang up from the teleconference, the house is once again too quiet. As is my norm, I turn to music to fill the emptiness and the first of the mix is an earworm that has been stuck in my head these last couple of days. A duo from Ireland that we’ve followed from their days in the The Choral Scholars of University College Dublin. It feels like they’ve been along with us on our CHF journey where we kept insisting in 2018: we have a trip planned to Ireland, we’re going. Their harmonies soothe and, as always, lift us at those moments when we need our spirits to soar beyond the now.

And yes, soon, it will be time for Rich to come home. Not yet, but soon. Because there’s someone I’ve been missing. Who is the better half of me.

Thank you to glenn&ronan for this cover of Come Home.

Hello world
Hope you’re listening
Forgive me if I’m young
For speaking out of turn
There’s someone I’ve been missing
I think that they could be
The better half of me
They’re in the in the wrong place trying to make it right
But I’m tired of justifying
So I say to you

Come home
Come home
‘Cause I’ve been waiting for you
For so long
For so long
And right now there’s a war between the vanities
But all I see is you and me
The fight for you is all I’ve ever known
So come home

I get lost in the beauty
Of everything I see
The world ain’t as half as bad
As they paint it to be
If all the sons
If all the daughters
Stopped to take it in
Well hopefully the pain subsides and the love can begin
It might start now
Well maybe I’m just dreaming out loud
Until then

Everything I can’t be
Is everything you should be
And that’s why I need you here
Everything I can’t be
Is everything you should be
And that’s why I need you here
So hear this now

App Fatigue Is Real

There is an app.

There is always an app. This one is a link to Rich’s medical records in abbreviated form. Results of blood work. Results of MRIs, CAT scans, X-rays. Reports of his implanted loop monitor. A little microcosm of our journey in abbreviations and code numbers assigned by health care professionals.

In that app are ambulatory documents that pop up after each visit to a specialist. There we find whatever changes to medications or protocols that were discussed. But before you get to that, there is a list of every single side effect and problem that has come Rich’s way. There are listed forty-five issues. When we first saw our oncologist seventeen years ago there was one. A diagnosis of Non-Hodgkin’s Lymphoma. At that point, the specific type was not yet known. Our first visit with the oncologist had a humorous moment when, lifting up a single piece of paper from his file folder he said “This is it? This is all you have?”

And it was.

As we’ve discussed before, our journey began in 2003 as we were getting ready for a family vacation along the St Lawrence Seaway in a rented houseboat. To make things easier on the water, the guys were all getting a buzz cut, no flyaway hair for my men!

As I began Rich’s barbering, there were two tiny raised bumps on his scalp. Little cysts that I said casually he should have looked at. A few weeks after our return from the locks, islands, bays, passing cargo ships, lighthouses big and small, swimming, fishing, cooking and stargazing into the night, Rich had those cysts removed. The surgeon said they looked like nothing to be concerned about. That single page report begged to differ.

We’re now seventeen years since that trip on the river. The one little piece of paper has grown one by one, and now forty-four of those problems have been addressed. Like that river we boated on in 2003, Rich keeps on keeping on, sometimes with a bit of a stop and wait like the locks along the way.

In a few weeks, what we hope is the last of these problems will be taken care of. Rich has had a left bundle branch blockage since he ended his first rounds of chemo in 2004. It was never really on our radar until it was discussed that heart issues can come from the chemo proposed in 2014. Anyone who has been a reader here, knows that the last two years, that LBB has been problematic and compounded by the beneficial poisons that brought Rich to remission.

Our doctors have been talking about giving our former Borg an implanted CRT-D device which is a combined pacemaker/defibrillator for a couple of years. CRT stands for Cardiac Resynchronization Therapy… it works to get the heartbeats from the ventricles to work in sync. In this case, the D indicates a defibrillator is part of the package as well.

When he had his ketamine infusions this May, our pain relief guru shook his head and consulted with our cardiologist… “his heart wants to go into a-fib, but then it refuses to.” Ever the fighter!

A couple of weeks ago our patient ended up in the ER overnight from a combination of factors affecting a combination of his issues. A hot day, congestive heart failure, gardening work, reduced kidney function, sweating, how much water intake was viable… a fine line of where the tipping point involves several decisions. Staying outside in the heat, doing just a bit too much yardwork, drinking the limited but recommended amount of daily fluid yet not accounting for sweating brought Rich’s blood pressure down to 71/41. We tried to bring back up but he needed a bit more than we could provide at home. This time, even the walker couldn’t get him to the door; our doctor arranged for an ambulance. We had immediate thoughts of another TIA, but what it boiled down to is that his LBB is making his heart work too hard against himself.

That ER visit showed that now it was time for Rich to go full on Borg again. In two weeks, his loop monitor will be removed, and the CRT-D will be installed. This pacemaker/defibrillator will help his left and right ventricles beat at the same time. That LBB will not be able to have that little blip where the left ventricle doesn’t quite contract at the same time as the right. Resistance is futile!

In the meantime, we’re working on getting the little room on the first floor set up as a neutral level place to relax and recuperate. Testing is in progress now as Rich is a little more tired, a little more out of breath, retaining a little more fluid. Thankfully, we can now release it into the beta level… planning our meals out and figuring which streaming platforms might be fun for after. Because, ya know, there’s always an app.

TIA: Thanks In Advance

There has always been a certain serendipity to our journey that started in 2003. Moments when I was exactly where I needed to be at a very specific nanosecond of time. Moments when Rich ultimately was in distress and would have been alone if I hadn’t changed my plans for no reason I could have explained.

One such moment was this past week.

As we have been sheltering in place since the Covid19 pandemic hit New York in March, we’ve turned to tasks and projects around the house that usually get tossed on the back burner when the spring weather draws us elsewhere to join with family and friends for holidays and gatherings and outdoor activities. Slowly has Rich been clearing, cleaning and organizing the workshop in the basement. On this particular day, he set himself the task of labeling various tool cases; drill bits, chisels, socket heads. Certainly not tiring, playing with a label maker.

You would think that spending eighty-three days of covid lockdown we would be bumping into one another throughout the day, but as I work remotely from home, I’m in an upstairs bedroom/office. My usual schedule is to grab a bite and continue to work through lunch, emerging at 5pm to join the rest of the household. For some reason, I left my desk and went downstairs to sit with Rich in the porch.

He seemed tired and his words were a little slurred as if his tongue was thick. I advised him to stay hydrated and drink a little more on this warm day. It’s a thin line we walk with congestive heart failure and kidney failure- the line between too little and too much water. With not enough hydration, his blood pressure drops so we decide that we need some information. First I ask him to use his loop monitor wand to tag this moment on his implanted monitor as an event. We check his blood pressure and oxygen levels. And another adventure begins.

From 226/129 to 84/43 his BP is all over the map. Rich becomes fascinated with the numbers and keeps hitting the button to take another reading as the roller coaster of results continues.

His O2 monitor shows a reading of 99 and we’re content. Until it then drops to 77 and then back up to 96… another roller coaster.

Rich’s phone rings; our order from the local shop is ready. He stands to get payment information and barely makes it into the next room. I finish the call while he sits. We both wonder what is going on. It’s time for the ER.

Suddenly he complains of a headache. It is the first description he can give me of how he is feeling. His response until then is “I don’t feel right but I can’t explain it.” He has to use a walker to get out of the house. His legs don’t want to hold him.

We are so indebted to Amy who doesn’t hesitate to take us to the ER despite being unable to socially distance in the car. Rich’s numbers are still fluctuating wildly throughout the ride.

Like everything, it seems, covid has changed this ER from what we are used to. Masks have always been present, but it is eerily quiet. Social distancing at its best. No one wants to be here regardless of how badly they’re feeling. But most telling, when Rich and I complete his intake and he’s taken to be seen, I’m asked to leave. I’m given a number to call; they have my cell to call me. And the waiting begins.

From the very beginning, Rich and I have taken this journey together. However long he was in the hospital, I slept in the same room; whether on the floor or on my various broken vinyl recliners, I was there. It was the oddest feeling to walk away and leave him behind. In my place, he grasps our red book that holds all our notes, calendars, business cards, meds lists, latest reports… all our records of who what when where how. With Rich’s confusion, it was his lifeline to being able to answer the questions he would be asked.

Throughout the day I’m called to answer the parts Rich can’t remember and aren’t yet in our book… what happened today. I’m told they did bloodwork and a CT scan. They’re waiting for an MRI. I find out later they also download the recording from Rich’s loop monitor to check for the event moment he marked.

His web portal pings on my phone. He is covid negative. I keep refreshing the portal hoping for more results. And I wait.

At 10pm, the nurse calls to discharge Rich. I ask to speak to the doctor; I still don’t know any of the outcomes from the tests. At this point, the doctor who has just come on shift is unaware that the loop monitor readings have been reviewed. The disconnect being home instead of with Rich is thrown into sharp relief.

The tests have shown that Rich has had a very probable a TIA: a transient ischemic attack. The doctor explains that there are two areas where microvascular irregularities were detected. The transient or temporary near blockage was the cause of the weakness, headache and slurred speech. We are thankful to hear that there is no lasting damage. This warning is again serendipitous. Usually undetected or unnoticed, these TIA are usually an indicator of probable massive strokes in the future. This micro stroke is more than enough for us, thank you very much. But, ya know, thanks for the heads up… thanks in advance.

Now we add another specialist to our list of gurus and some new prescriptions to our list of meds.

Despite the lateness of the hour, Rich is standing around waiting for us outside the ER doors; looking for Amy and I to arrive. He looks and sounds as robust as he was in the morning as if nothing had happened.

Thank you, Universe. We accept this warning with much gratitude as we settle down for much needed sleep in our own bed. Together.

Ketamine in the Time of the Covid

When Rich was first told of his NHL recurrence, we set goals. Goals for after. Goals for remission. Goals to celebrate. Goals to hold on to, to keep us going. Of his travel goals, he had an immediate response… Ireland. With a few health bumps along the way and with some very real help from friends, we got there. A goal worth waiting for. A magical place.

In the last two months, all our goals have been on hold. As with the rest of the world, we’ve been home. With lots of gratitude and more than a little frustration, I can work from home and order our needs to be delivered. We, like so many others, connect with friends and family from afar.

One by one, our plans and goals were canceled or postponed. A concert, a wedding, a gathering, travel… the list went on and on. One postponement was Rich’s ketamine treatment for his peripheral neuropathy. In early February his feet had slowly begun that relentless pain and so we booked the earliest appointment, April 3^rd. In the meantime Rich would rely on medical marijuana for relief. Before lockdown, he went to the dispensary to get a supply. As March continued on, more and more plans changed but we received a letter from the ketamine doctor; he would remain open as an essential provider. But we weren’t sure… do we chance it? Then word came, the hotel we stay at during Rich’s treatment weekend was closing for the duration. Closed also were all the hotels in the downtown Manhattan area. Rich is, at best, difficult to transport after a ketamine treatment. Let’s postpone… how long could this crisis last?

We rebook… May 16^th. This seems like a safe bet, particularly when the governor announces shortly afterwards that the city will reopen May 15th. Perfect. Hotel reserved. Plans made.

With the rest of the world we watch the numbers. Daily are they on the rise. Then a plateau. Bright spots in an otherwise monotonous stay safe at home protocol. We stay busy, finishing projects that have lingered too long. Time is available.

We stay isolated. Rich’s health and age put him squarely in the vulnerable status. We follow all protocols. We take no risks. We know the cost. Friends fall ill. Some recover. Some do not. We mourn. And we take no risks.

Everything coming into the house is sanitized and quarantined before Rich can go near it. Masks are worn in our own garden; our property is small and it’s too easy for someone to be too close without a mask as they walk the neighborhood. And many do not wear masks for neighborhood walks. Outside of NYC, our Nassau County on Long Island ranks #1 in covid-19 cases. We are in the epicenter of this pandemic.

Comes the day that we need to get more MMJ, I go into the dispensary. It has been over fifty days since I have been in a building other than my home and have spoken to someone I don’t know. I am suddenly incredibly socially awkward. I have no experience with social distancing inside a building. Do I throw my ID card to the person at reception? Where do I go, what do I do? Thankfully they have taped the floors and chairs to guide me in distancing. Also thankful that there is no one else there… my awkwardness affects no one but myself. The person at reception is gracious; he takes my order and brings the medication to me, leaving it on the desk for me to take when he is far enough away.

Now in May, the numbers still are too high, but Rich cannot postpone the ketamine again. Over sixty days into the crisis, the pain is no longer resolved by the MMJ. It is time. Usually we take mass transit, stay in a hotel and make a four-day weekend of it. Day one and day four, to enjoy the sights of the city and to explore restaurants. Day two and three for treatment; an all-day protocol and nights of pure wonkiness. Our normal routine is not possible; we find the hotel is still closed despite our reservations.

We impose ourselves on our son Nick who agrees without hesitation. His one-bedroom apartment in Brooklyn will be our home base. He will drive us to and from our appointments. We’ll bring our own wheelchair so we will not have to return the one from the doctor’s office to Manhattan on Monday morning. We order a twin air mattress, to augment his couch for sleeping,to be delivered to Nick’s apartment as well as some foods to cover our meals while staying with him. We bring our own sheets and pillows. And yes, in the time of the covid, we bring toilet paper as well. We do all we can to minimize his possible exposure on our behalf and to leave no holes in his larder. We are grateful to him beyond measure.

Although this isn’t the time to play tourist, we feel that it may be a good time to stretch our legs and get some fresh air. Downtown NYC is not a largely residential area and the streets are fairly quiet. Day one, Rich and I drive in and stroll Battery Park promenade on this, a sunny day. There are very few people there as compared to our previous times. Our intent this time is to visit the Irish Hunger Memorial. It is a recreated Irish hillside complete with a relocated stone cottage, plants native to Ireland and boulders from each county of that country we loved. It represents people who knew a thing or two about life’s trials and how to deal with them with joy and sorrow combined. It seemed a fitting place to be.

We couldn’t experience the totality of the memorial as the entrance to walk that hillside was closed to help in social distancing, but we were transported, nonetheless. The rise of the land, the familiar stone walls, the wildflowers in bloom… we were back.

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It felt like coming full circle in our journey.

On the walls that support the rise of this hillside are facts and quotes as they apply to the Irish famine. It reminds us of a time when families were separated by distance. Food and necessities difficult to come by. People helping in any way they can. The similarities with the crisis today are apparent.

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In 1847, the people of the Choctaw Nation, who knew tribulations during their Trail of Tears in the US just years before, collected and sent $170 to the Irish to help feed those starving from what many call the potato famine. In 2020, the people of Ireland collected, as of this writing, almost four million dollars to repay that debt to what is now the Navajo and the Hopi reservations, whose people are suffering greatly during the covid pandemic.

Full circle indeed. We went to the memorial to remember we’re a world family; connected. And to reaffirm our love for Ireland and her people. And to gather strength of spirit.

Circumstances may differ through time, but the family of man continues on together. We remember and learn from the past.

Our experience this year in the city and in Nick’s Brooklyn was vastly different than in previous times. In Manhattan closed stores, empty streets and mask protocols felt post-apocalyptic. And yet Brooklyn was as alive and vibrant as always. The differences were disconcerting. We now understood Nick’s trepidation on going anywhere.

Our original plan was to stop on our way home somewhere to again walk and enjoy the out of doors; a park or a beach boardwalk, a greenbelt hike. But there was something different now with covid lurking about. We had an overwhelming feeling it was time to go home and close the door behind us.

Now we count the days to make sure we, and Nick, have been successful in avoiding infection. We return to our separate isolations.

For now, we’ll be together in virtual media. But just for now.

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“I want you to listen” ~Kimberly Rex

From my facebook page today. It seems like it should be here too in the days of this pandemic.

I’ve pretty much been staying away from posting any Covid19 news other than snapshots of how we’re trying our best to shelter at home.

As most of you know, my 94 year old mom lives with us…. if you know her, you know Chris Miller will probably outlive us all!

You may also know that my husband Rich has been on a rather interesting journey with cancer since 2003 which ramped up in 2014. Our experiences can be found at [our website] Suffice to say, his return to health has not been without some twists and turns. Ones that put him even further at risk. Heart, kidneys and immune system all compromised. An asthmatic since the 70’s to boot. And yet, he has continued to live to the fullest.

To say these times are scary for our little household is a great understatement. I’m scared shitless. Which is probably good since toilet paper is hard to come by.

We may have passed the writer of the letter below, Kimberly, in the halls of the hospital or maybe the cancer center at Northwell. Her letter was posted on their page. Her story is our story. And in many ways the story of those of you who know or live with someone at risk.

And right now, EVERYONE is at risk. Day by day, the definition of a vulnerable population is changing.

Whatever your political affiliation or belief, please read this with an open mind and an open heart and hear, really hear, what this woman is saying about the increased fears that my family and I live with every second of every minute of every day.

The only way we can all end this pandemic is to shelter in place. Take the precautions that the CDC is outlining.

Protect those who cannot protect themselves.

Protect those who are on the front line.

If not for you, for them.

Stay home.

Peace.

Be well.

———–

“An Open Letter To Those Still Ignoring Social Distancing Recommendations

What one at-risk woman wants those choosing not to follow COVID-19 guidelines to know.

Kimberly Rex, Writer

Right now, you’re still lucky. You’ve never been sick. Not really. You’ve never lain curled up in a bed at home or a hospital and tried to remember how it felt to be well. You’re healthy. You always have been.

Your heart is not like mine. It doesn’t struggle to beat the right way or need a pacemaker and four medications just to be strong enough to send the oxygen you need through your veins. Your heart can handle this.

Your kidneys work all on their own. You don’t need a machine to do their job. You haven’t had a recent stroke or heart attack. Your body isn’t still fighting the effect of the toxins you breathed in at ground zero, when you were told the air was safe. Your lungs aren’t still deteriorating 20 years later.

You have a strong immune system. You’re not in treatment. You haven’t had powerful chemicals coursing through your body, fighting like hell to kill the cancer cells but poisoning the healthy ones too, robbing you of the ability to fight illness. If you get COVID-19, it’s likely you won’t die.

You’re young. You’re not soaking up every last minute with your grandchildren while your age fails you little by little. If you get this virus, you may not develop acute respiratory distress syndrome. If you do, your young, healthy respiratory system will hopefully recover. It won’t “shut down under viral assault.”

You think this virus won’t kill you. Recent numbers from the CDC say that you are most likely right. But though the numbers are low, there is still a chance that you could have severe complications. You could need to be hospitalized. It’s possible.

And I see you. I see as you still go to parties and gatherings. I hear of mall parking lots still filled with cars and long, twisting lines at nonessential stores. I see you plan playdates for your children and take pictures of them pressed against their neighbors and friends. I listen as you complain about the inconvenience of it all and claim it’s all a lie. I read when you proclaim your refusal to panic, as if panicking and being smart are the same. As if we should care more about our reputation than others’ lives.

You see, you’re lucky now. But there had to be time when you weren’t.

There must have been an instance when you were part of the small percent, when you depended on the choices of others to make sure you and your family were safe.

Maybe your child has a severe allergy. Maybe you trusted in the other parents at your school every day to follow the recommendations and keep peanuts out of the classroom, away from the child they can harm.

Maybe you love a first responder. Maybe when Hurricane Sandy raged through your community, you trusted those who were told to evacuate to do so. You trusted that your loved one wouldn’t have to risk his life to save someone who didn’t listen.

Maybe you’ve sent your child to a home that has firearms. And you worried but believed you could trust the parents to do the right thing, to listen to the statistics and the experts to keep that gun away from your son or daughter.

And yet, you have not listened as expert after expert has said that social distancing is our only real defense, that we must limit social interaction to slow the spread of this disease and flatten the curve. You seem to think that having to go to work or knowing that the supermarket is open for business means any gathering is fine, but limited means limited. It means stay away from others whenever you can.

You haven’t listened as scientists have explained that this is all about the numbers. That the more slowly the disease moves, the more effectively we can combat it, that the more often people get together, the faster it will spread, and that the faster it spreads, the more overcrowded our hospitals will become and the less capable they and our brave doctors and nurses will be of treating patients. You haven’t seemed to accept the fact that too many patients means not enough beds and not enough respirators and just not enough.

And there still will be car crashes and other accidents. There will be aneurysms and emergency surgeries. There will be new diagnoses. You may need treatment too.

Reach into your memory. Remember a time when you were at risk. Or your mother or your father. Your kids or your spouse. What would you want the healthy people to do? What would you want from the lucky ones?

I want you to listen. I want you to care that your actions will affect my health and the health of the other people at fatal risk from this virus. I want you to care that if I contract COVID-19, I can die. I can leave my 8- and 4-year-old daughters motherless and miss most of their lives. And there are many more like me and others much worse off than I am.

I want you to know that it’s you, the healthy people, who will determine what happens next. You are the ones still out there. It is you who may be walking around without symptoms. You, who may have spread the virus to someone else and someone else and someone else.

Only you can make a difference now because people like me are already staying home. They’ve already closed their doors to visitors. They’re washing their hands and washing their hands, and disinfecting every surface and every item over and over again. But what if they already have the virus? Their lungs could already be filling up, each breath already strained. When they reach the hospital, will there be enough beds for them? If you are one of the few younger, healthier people who need a bed, will there be enough for you? I hope so. Because I hope that we will all have listened, done our part, and cared enough to save each other’s lives.”

High Anxiety

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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.

We’ve likened our stay in the stem cell unit to moments from Young Frankenstein. As Rich put on his compression socks when we went to Iceland, he sang from Men in Tights. But lately, lately we’ve been feeling a bit High Anxiety.

High anxiety … it’s always the same;

High anxiety … it’s you that I blame.

It’s very clear to me I’ve got to give in.

High anxiety: you win.

Not so fast….

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!

High anxiety whenever you’re near –

High anxiety – it’s you that I fear.

My heart’s afraid to fly – it’s crashed before …

But then you take my hand;

My heart starts to soar once more.

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.

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!

Darmok And Jalad At Tanagra: The language of understanding

Whether it’s chemo brain, current medications, or some other reason, our communication lately has been reminiscent of the Star Trek: Next Generation episode referenced in the title of this post.

As we’re prepping for our Memorial Day weekend gathering of friends we have the following exchange:

Me: What is the expiration date of the salsa in the fridge? Is it next year?

Rich: I still have to pick up the lemonade.

Me: I get that, but what is the expiration date of the salsa in the fridge? Is it next year? I think it is.

Rich: I haven’t picked up the lemonade, I still have to pick it up.

Me: Forget the lemonade, does the salsa expire next year?

Rich: Why are you raising your voice?

Darmok and Jalad at Tanagra. Indeed.

For those unfamiliar, the crew of the Enterprise is tasked with building a relationship with a group of aliens that seem to have an impossible language code to break. The ship translator is at a loss.

It is not until further into the episode that the two protagonists share fire: “Temba, his arms wide.” And from that, Picard understands: “his eyes open.” Captain Picard rightly deduces that his counterpart’s language is based on speaking in allegory. The experiences within the Tamarian legend of Darmok and Jalad at Tanagra need to be known in order to understand the reference and how it applies to the current situation. In this case, the two warriors were forced to cooperate when faced with danger; their shared adversity bringing them closer together.

I read the book “In Shock” by Dr. Rana Awdish this past weekend and it brought this Star Trek episode into my consciousness as well. Dr. Awdish, a critical care physician, died. And lived to write about it. Her book chronicles her extraordinary physical and emotional journey and, in large part, pinpoints her dissatisfaction with how she, and the physicians who are now treating her, the ones she had worked with, were taught to interact with patients. There are emotional walls that they are advised to build… don’t get to close, you need to be remote, removed, objective. And while it makes a certain sense, by the same token, you can be treated like a disease, a procedure, a treatment. Not the living, breathing person you are. There are moments when the doctors are discussing her medical status as she is bleeding out. She can hear them. She sees what her patients have seen and heard from her and with that, she comes to understand that there is much important and relevant information that she, and her colleagues, miss. A certain language is used that is not necessarily patient friendly; a layperson can interpret the message wrong easily. With this experience, she then works for and continues to this day to work for as an educator, a change in how healthcare providers interact with their patients; to bring empathy and compassion. To fully understand one another.

We’ve discussed here how we were able to take a step back and observe when Rich was back in the stem cell unit for an infection and discern the differences certain nurses and orderlies interacted with us and how different those interactions made our day. Since we were not in crisis mode or going through a treatment regimen in the stem cell sense of the word, we were given an opportunity to take notice as Dr. Awdish does from her perspective. And it opened our eyes wide.

When Rich begins to speak in Tamarian, I need to remember those lessons from our past. I need to have my eyes open. And to hear, not the just words, but the meaning. I need to understand the nuances correctly and to take in all the possibilities of what he is trying to say even when the words and their meanings are clear. I need to put myself in his place. Sometimes, with the passage of time, we forget to do that. We both have frustrations. We learn to lay them aside again and communicate.

The salsa? It expires next year, so there was no rush to get any chips and since we weren’t getting lemonade anymore, we didn’t need to go to the store after all.

We serve homemade hummus instead.

Picard and Dathon at El-Adrel.

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