cancer – Use What Exists

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.

High Anxiety

0300500236653119905928103411440

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!

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.

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.

20180607_165004 — 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.

Resized_20180607_225113 — 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.

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

You Can Only Come to the Morning Through the Shadows. ~ Tolkien

The rain has ended and the night is quiet. The sound of the soft breeze in the leaves of the birch is the only accompaniment outside. Our windows are open.

We are once again sleeping in the little bedroom on the first floor. Stairs are near to impossible and small tasks leave Rich gasping. Oxygen levels are all over the place. Balance is a thing of the past. Thankfully, infections are not with us this night. But breathing is shallow, difficult, and noisy.

Rich attempts sleep in his recliner; laying flat it’s impossible to breathe. As the night moves on, the recliner isn’t working any longer. His breathing is labored. The night sounds are no longer quiet although his usual snoring doesn’t exist. Once again, doses are checked, timing discussed and more medications are considered. Days and nights are upside down. We settle into that now familiar routine. As Tolkien’s quote that gives a title to this post, we’re in the shadows.

Since Rich was discharged in March, we experienced a brief and very slight uptick and then a steady downhill trend.

We met with our specialists shortly after we left NSUH as the discharge instructions required. An additional follow-up with our immune doctor shows that Rich’s body does produce new B cells… however they don’t mature which means they do not protect him from infections as they should. They do not produce the antibodies needed. Immunotherapy is suggested since his infusions in the hospital have protected him well. But we do need to also take into consideration the side effects that concerned our stem cell guru when she discussed immunotherapy as a possibility with us in March while Rich and I strolled the hallways on 7 Monti.

As the kidneys are most affected, we’ve added a nephrologist to the specialist mix. Creatinine level has shown to be elevated throughout our journey but with some thorough research on the doctor’s part, it’s concluded that the elevated number has been for the most part stable since his stem cell transplant. Probably a new normal from the intense chemo. We have a renal ultrasound scheduled to document and confirm no other issues, but are otherwise approved for immunotherapy and ketamine treatments as long as the dosages remain as they were before.

And here we are. Most answers are as we have hoped them to be or what we expected. And yet the breathing issues remain and continue their slow but steady downward trend. Our cardiologist had advised us to see him three months post hospitalization to give what he called the insult, the injury, time to heal. In two weeks we’re scheduled to see him. But our concerns peak and we contact him to let him know where we are.

Again, we are blessed with the health team we have. They listen and understand our concerns. This doctor, our cardio guru, understood our fears four years ago when we first went to see him. Our oncologist recommended we see a cardiologist given the doses of chemo Rich had his first go-around in 2004, particularly since the MUGA scan showed some areas of abnormality that were not there in 2003 as part of that pre-chemo testing. When our guru told us in 2014 that we should consider an angiogram, we asked if we could refuse. Rich had been through so much with bone marrow biopsies and radioactive goop and port installations… the invasions to his body went on and on. At that point, to consider an allowing a catheter to be threaded from his groin to his heart was the tipping point for him. Our cardio doctor agreed it didn’t have to happen. He would get EKG records from our GP, and we’d come in for the followup tests between each cycle. We could get by that way. We were relieved.

Four years have passed and thanks to the doctor’s diligence, we’ve been able to avoid the cardio catheterization. But now it’s recommended once more. This time without hesitation we say yes. We need these answers. Our doctor explained that this will allow him to fully see the function of Rich’s heart, arteries and veins, as well as take a look at his lungs and how they are interacting with the heart. Answers. It will give us the answers he needs to diagnose any heart disease instead of the “probably” we have now. Therapy, meds and lifestyle changes will be clear. We agree. The time has come. Let’s fix this!

It has been a long week waiting for the insurance approval. On June 6^th, instead of the cardio rehab we had been scheduled for, we’ll be at NSUH for the angiogram and the answers we seek. In the meantime, I watch this very odd rhythm…the rise and fall of his chest with a hiccup in between … and I know that watching is not as difficult as this breathing is to him, but it feels awfully close.

We look forward to those answers, we look forward to the solutions, we look forward to us both being able to take a deep breath and the night sounds to once more be just the night. With Rich’s snoring… ya know… normal.

“Cut my pie into four pieces, I don’t think I could eat eight.”

Two days have passed since the Sunday we entered the chaos of the ER. Rich has been, the most part, reclining in his hospital bed, and it is amazing how busy one can be while motionless in a hospital bed. The long night in the ER gave us very little time for sleep and morning came too early. A virtual revolving door brought on a Q&A marathon with each specialty having their own focus. In many ways, this is a boon for the mystery we hoped to solve before our unplanned detour. Throughout the day the new doctors that have come on board since we’ve last been here have us repeat our history as well as what has brought us here this time. As well as the floor staff, our main gurus from each division that has been part of our journey have stopped in, ordered tests and discussed their differential diagnoses. More and more are we partners in this journey; having been managing Rich’s health outside of the hospital for the last two years. There is a comfort to the coordination that happens inside. This coordination also allows for the tests’ results to be further analyzed and lead to additional tests. Conclusions can be made quicker than on our own.

What seemed to be a huge step backwards is proving to be a blessing. Answers are coming fast and furiously during this admittance.

As always, once we reach a certain level of health, each consult ends with us requesting release. Yesterday was too soon but we did let our wishes be known. And we are heard. Our nurse advises us that for the most part, our intravenous meds are being discontinued… a sign of prepping for discharge. We are told that our pulmonologist is in the deciding vote… and we know his views on getting us out of here.

We work subliminally on our team. Rich is no longer in his bed, but we have breakfast sitting in the chairs with the hospital table between us. IV removed, he wears a t-shirt. We create a vignette of health; looking out of place in this hospital room. All indicators of illness are removed from view as much as is possible. Our plan is to take a stroll or two so the staff will see us up and about, as we do every day. It shows our determination to take our care back into our own hands.

This has worked for us before. We look forward to getting back into our own routine. Our own home. We know that once Rich’s health reaches a certain point, we need to be in our own space for the best healing.

We look forward as well to seeing the doctors this morning. We look forward to seeing them in the appointments made last week for the end of the month. We’re pleased that tests that we had anticipated for those appointments have happened already thanks to this admittance. Only the PET/CT scan remains; it’s scheduled for just days away. A delay may be needed as we do not want the pneumonia to give false readings. We consider making a second appointment for the following week just in case.

Twelve hours ago, Rich was given a three-hour infusion of Immunoglobulin. Amongst the tests administered since our admittance, we’re told that his immunology is off balance. We’ve always known the blood counts need to be on our radar and this one, as we’ve indicated before is the one we’ve been watching closely. It has been on a slow rise but never quite reaches the level we need. This infection brought it down by 100 since our last in depth bloodwork. We’re told that this indicates that he could have developed, since the transplant, an autoimmune disorder that creates that imbalance. And that a simple, periodic treatment of Immunoglobulin could be the answer we’re looking for. It’s something to keep in mind. We don’t need more side effects so it’s not a quick jump onto the bandwagon.

And now we do know that we will be going home today. Our determination for best impressions has paid off. Cardio came in and cleared us for discharge. Next was Infectious diseases. They are the kingpins this go-around… it is this group’s determination if the antibiotic that is only available by IV can be discontinued. We agree that we’ll contact them if there is any degradation at home. We laugh that we had plan B in place to convince him just in case and he feels, with the other antibiotics we’ll be supported by orally, we’ll be fine. Besides, we give him little choice.

The rounds by the other doctors will now be to discuss post-hospital plan for care. As we have appointments scheduled with them already, it will be more protocol than a necessity.

It’s just a matter of time and paperwork. Every hour, another confirmation of our leaving or another step closer.

We’ll be home by dinner. Sprung!

And in honor of today’s date 3/14/18 as well as the title of this blog post, credited to Yogi Berra as we enter baseball season, we’re prepared.

Happy Pi Day!

To Be Like A Lotus

21640711_10154274309962824_5406311000703949248_o

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!

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.

21106446_10154223913532824_843818479463955905_n

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.

Be sure you put your feet in the right place, then stand firm.

Abraham Lincoln was quite right when he offered that advice. And it has not been as easy as one would think!

As January came to a close, the little twinges of neuropathy that had lain dormant since October began to show themselves. Rich’s balance was starting to once more resemble the sailboats we watched on the lake last summer… there was a slight list and occasional stumble. We met with our ketamine team and they advised another five-week session. And asked if we could wait until April so that we had a six-month span between treatments. Not a problem.

There is a certain frustration that most patients have with their health care and that is either waiting in offices forever or waiting for an appointment itself. When you aren’t feeling well, in whatever shape that discomfort takes, that frustration is magnified. We’ve found medical offices each work differently and sometimes the doctors themselves are not aware of how theirs truly work. We were told the insurance approval and appointment scheduling was under way when we saw the K doctor in February. We would start at the beginning of April.

Long story short, when we called in mid-March to find out about our appointment we were told it would be mid-May… they were booked til then and they had just gotten Rich’s file. We asked to speak to the doctor himself. Now, Dr Ketamine is a very nice man. He treats his patients with respect and care. His manner suits our ways. He’s direct. And he took our concerns to heart and is very much a partner in our journey. Rich was immediately scheduled for a one-time four-hour infusion, a booster, right away. There were no other appointments to complete the once-a-week-for-five-weeks infusions but this small gap existed for us to slip into to hold Rich over until May.

As we thanked him for this, we also admonished him, he needs to change his dialogue with his patients… his office does not run the way he thinks it does and to present that expectation is to set patients up for disappointment. He agreed. We learned a valuable lesson. We had gotten complacent with our stem cell team who took control of our appointments once we were in their hands. That time is now past. Another milestone slaps us in the face and tells us to wake up!

As I have often said of Rich, I am in awe. The pain he dealt with before these ketamine treatments or every day when the ketamine wore off is astounding. And he always handles it with humor and stoic resolve. But in March just before the infusion booster, as he pulled off his socks at night, the internal screaming was beyond containment. That moment when he would sit and lift his foot to prep for bed was put off until there was no recourse but to get on with it. And hope the meds he just took will kick in soon. His shoulders would shake in an effort to control the sobs. It was impossible for us to wait two months. As Rich said today in wonderment “I didn’t know it could be so painful under your toenails!”

That booster in March eased the pain slightly but was indeed just a stopgap. It was not long before the nighttime rituals were dreaded once more and the cane was again needed to keep him upright. We are determined to maintain a strict six-month rotation on the schedule to avoid this gap going forward.

Abe is also quoted as saying “Most folks are about as happy as they make up their minds to be.” Indeed. Throughout our journey Rich has had such humor about each situation we have found ourselves in. He has made up his mind, as that man whose likeness is now carved on Mount Rushmore has said, to be as happy as possible. And it manifests itself in so many positive ways, despite his ongoing neuropathy.

Two days ago, my brave and strong-willed husband began the road, once again, to relieve this pain that plagues him. We’ve started, as we did seven months ago, the four-hour infusions once a week for five weeks that will ultimately have him without pain on his radar. As we left the facility, we couldn’t help but laugh at how this building has no hand rails on the steps leading to the sidewalk. They house this ketamine group as well as a spine institute… wheelchairs to assist in the lobby for patient use. And yet… no handrails? Feet and brain were temporarily disconnected as we attempted those rail-less stairs. We roared in amusement looking as if we just left a late night of imbibing at the bar; holding each other up. The cab driver looked at us warily, hoping, I’m sure, that we were not his fare! For a couple of days, Rich will have this loopiness but we hope once more that instead of those blade-like stabbing spikes and internal screams, he will soon glory in the feel of texture on his feet… warm sand, fresh-mown lawn, cool stone. Or as he did in January, the feel of his grandsons vying for his attention as they clamber to his lap, his feet their boost up.

Mr Lincoln was also known to say, “We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” I do know for certain Rich will meet the future as he has done so far, finding the roses and not the thorns despite their efforts to prick.