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 3rd. 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 16th. 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.
~m
———–
“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.
By
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.

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Usually, and this is the scary part, Rich feels no indication of any heart incidents. If he did, the unit also comes with a small pocket-sized wand. That wand, in case of felt palpitations, syncope, racing heartbeats, or any oddities, is placed over the implant after pushing a button to activate it. The implant goes back six minutes, records forward to one minute past the point where the button on the wand is pushed and sets that data aside to send that night through the monitoring unit. This will tell the doctors if what he felt was indeed a heart episode or not.

In so many ways, we’re told, this monitoring will not intrude on our lives. When Rich is away camping with our grandson, the data will send when he gets back. Other than when he feels he needs to record an incident; he has no other action than to sleep near his monitoring unit. Each time we visit the doctor, they will download ALL the data and the implant will continue to record for three years. At the end of the time, Rich will be once more dis-assimilated from the Borg Continuum.

Simple!

But we’ve had complications and find ourselves once again at the office of the cardio electrophysiologists well before anticipated. The site is tender; more than it should be at this point post-surgery. And then there are the night sweats. They start with chills; Rich is cold to the core. Then he wakes up drenched. Little fevers come and go. All the bedding and his t-shirt are wet and need to be changed. Initially, days after the surgery, he’s examined, and we’re asked to wait and watch as there is no evidence of infection. The incision site is healing beautifully. So, we watch, and we wait.

A week after surgery, he’s still experiencing the sweats and those odd little fevers. As the doctor and the nurse practitioner palpate the area, Rich jumps when they hit a particular spot. It’s decided to start antibiotics in a very Dr House way. If he doesn’t respond to the antibiotics after a few days, then it’s something else.

The aches, the fevers, the night sweats all continue at ten days post-op. But the site of the implantation is more comfortable. We decide to give it one more day before bringing it again to the attention of our gurus given that increased comfort. We’re not ready to stop the antibiotics yet if we’re seeing a better result. And perhaps this will be the night when the sweats will not come.

Watch and Wait.

And praying the train whistle doesn’t blow while we’re still in the tunnel… much better to be in the station and ready to hop on the train and move forward again!

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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His Power Is In Your Hands!

When we were about the age that our grandchildren are now, our upbringing was of the free-range kind. Basically, we were sent out to play and admonished to come in when the six o’clock siren went off. Usually Saturday mornings were spent watching cartoons while we ate breakfast and doing our chores before we were free to set off on our adventures. Wildly different than anything we had ever seen before were the early anime offerings of Speed Racer, Astro Boy and Gigantor in the mid 1960’s. No Looney Tunes these! Wide eyed kids with an almost James Bond arsenal at their fingertips. Their theme songs were simple earworms that would not give up.

As Rich had limitations while his meds were being optimized, we figured a Roomba would help take care of what are still, in our adult lives, Saturday chores. So it was fitting, that, given the option, our little self-propelled vacuum would be named after one of those anime characters: “Gigantor the space aged robot, He’s at your command….” Yes, please vacuum.

My phone could and did set him on his path around the house, sucking up debris and dust. If I was at work and Rich activated him, I would get messages when my space aged robot got into trouble and these would make me laugh, “Gigantor needs your help” or better yet, “Gigantor is stuck near a cliff!”

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A cliff.

 

 

Lately, it has been feeling like our household is stuck near a cliff; a precipice that may or may not be the way we want to go.

A couple of weeks ago, Rich had another episode of syncope; he blacked out without warning while walking through the house; no cliff dive this… he was walking on a flat surface without obstructions. He has taken care when getting up from sitting to center himself before moving to avoid any dizziness or lightheadedness. But there are times when a quick drop in blood pressure will manifest and hit unexpectedly. Or was it an irregular heartbeat?

This time, his fall landed the bulk of him relatively safely on the dining room rug. His shoulder wasn’t so lucky. A huge open scrape went down his arm, his shirt having ripped. From what we can tell, he hit the outer corner of the baseboard molding of the bookcases. Sharp. Mom heard the fall and sat with him and did her best to help him, bringing a chair to his side for him to push himself up on. When I got home, we cleaned the sizeable wound and did what we could to get him comfortable. Bruises began to blossom.

We meet with an orthopedic and he tells us that the floating calcification he sees on the x-ray may have been in his shoulder before; we have no slides to tell us when this occurred. His take is that we just need to allow the inflammation to go down and see how Rich’s shoulder feels from there. A well placed cortisone shot helps in the days to come and Rich is advised to do mild exercises as home physical therapy to avoid frozen shoulder syndrome.

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We had a follow-up with our Heart Failure guru regarding the fall as well as to discuss the results of the CPET testing to see if a pacemaker may be of benefit to him. She spouted numbers and statistics as I frantically jotted down notes. Then she went into the down and dirty bottom line:

The overall test results indicate something called oscillatory breathing… almost a type of apnea… while exercising. This ties in well with her previous decision to have Rich evaluated at a sleep clinic. Oscillatory breathing is very much associated not only with CHF but also with the centralized sleep apnea she suspected. The guru offers to see if she can get us an earlier appointment than the July one we currently have. Then she’d like to have another CPET done after to see if there is improvement with whatever suggested therapy the sleep group has. CPAP or BPAP therapy in the overnight are generally the solution. And this helps the heart to rest and heal. The option of a pacemaker for support that we discussed in our last post is now a stronger contender given the results and Rich’s fall …and we’re getting closer to yes!

To add to the data and to perhaps help find a definitive cause to the syncope episodes, we discuss heart monitoring options. The best choice seems to be a loop monitor which would be implanted below the skin (Borg once more!) and will provide downloadable information on heart rhythms. After her discussion with our cardiologist, it’s decided to go forward with this. In two weeks, our One of Ten (formerly of Nine) will get this procedure done and another level of data will be added to the pacemaker decision. We will now be welcoming a cardiac electrophysiologist to our list of experts. There is a measure of relief with this; to have the support of some monitoring and get some real-time information as issues occur. If needed, again, a pacemaker will add to the ongoing support.

We also find we should revisit one of our meds that had been with us since we began prednisone at the beginning of this journey but was dropped two years ago. Zoloft had helped with the depression that prednisone brought upon the adrenals. When the pain management group gave Rich Cymbalta to help with neuropathy pain, they kept the Zoloft active as well. For a year he took both. And then we slowly weaned off, keeping only the Cymbalta for the neuropathy. But Rich has felt the difference.

Now that we’re coming to a year of continual med changes and tweaks, non-stop testing to optimize energy and healing, and a whole lotta everchanging rules, we think it’s time to consider Zoloft again. The cortisone shot Rich received in his shoulder could not have helped; steroids always depress his adrenals. And it is well known that chronic illnesses of all kinds can bring a discombobulation that is tough on the patient and that is detrimental on this path. Again, we welcome this available support.

Lastly, our doctor admonishes us to keep to the clean way of eating we did when we first met last year. With all the changes in the last six months, we’ve gotten a little off track. It’s time to pull back from that cliff we, like our Gigantor, were stuck near. If we need to send out a distress signal, we have a whole bunch on our team to respond, but ultimately, we are responsible for doing everything we can on our end… like our vacuum, we need to be reset onto firm ground, set the big button to GO and start anew.

Bigger than big,

taller than tall,

Quicker than quick,

stronger than strong.

Ready to fight for right, against wrong.

Gigantor the space aged robot,

He’s at your command.

Gigantor the space aged robot,

His power is in your hands.

Don’t fight forces, use them.

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

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

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

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

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

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

That has been his way throughout our journey.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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