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

Going Old School in 2018 – a look back

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Exactly a year ago today, Rich and I woke up in Manhattan for a weekend in the city despite a bomb cyclone or a polar vortex or an arctic air mass… whatever the weather folks decided it was… that just dropped the temperatures to the negative numbers along with some snow. Our oldest suggested we put off whatever we were leaving our Long Island home for. We explained that it wasn’t possible. We were there for medical reasons and to further delay was problematic.

Rich’s neuropathy pain was hitting a high. We’d delayed his ketamine treatments that had been so successful. Not that we wanted to. It just turned out that during the six months since the last infusions, the center affiliated with the hospital closed. Ultimately we signed up with a doctor in a downtown office building. January 6th, 2018 we woke up near the small tip of New York City in the depths of a bomb cyclone. Our glasses wouldn’t defog, our breathing needed protection or our lungs hurt. The sky was bright with sunshine but none of this was of any interest; we’d be spending the day in this office building. A short walk from our hotel around the corner was all we needed.

As we’ve reported so many times, Rich’s various treatments since his diagnosis have been state of the art. We spent a month in our little room down the hall within a hall as he received his own stem cells back as a transplant. That room had automatic everything including perforated walls that kept germs in the hallway and away from our patient. The process of the stem cell transplant itself was cutting edge. Although many of the chemo drugs have had a history going back into the early parts of the last century, the new uses were groundbreaking in cancer treatment.

The use of ketamine, a veterinary anesthetic, for chronic pain has always been one of those infusions that were carefully measured and administered in controlled conditions. Drip by drip, the dose was digitally monitored and counted. The hospital had Rich in a quiet room, similar to an outpatient surgical room which made sense for using an anesthetic.

When going to the hospital or its outlying center for pain management, we had a decent insurance coverage for these treatments. Now, the only places we could find offering ketamine treatment for pain were at locations that did not take insurance. It didn’t take long to decide that, whatever the cost, it was worth it. The freedom from the spiking, burning, shooting pain was worth whatever the price.

Unlike the hospital, this ketamine center was low key. And low-tech. The doctor ran an EKG and saw Rich’s left bundle branch blockage. As an anesthetist, he had the experience needed. Rich was hooked up to an IV. The bag was hung, not from a metered dosing machine but to a nail on the wall. The doctor looked at his watch and glanced at the rate of the infusion, drip by drip. He tweaked the flow until he was satisfied. I was invited to stay in the room with Rich if I wanted… a first for ketamine. Rich was given the same relaxant drugs prior to the start of the ketamine itself as he received at the hospital center.

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The doctor and nurse discussed his dosing, his vitals and what they expected. Instead of five doses once a week at 200 units each, we were scheduled for two consecutive days of 400 to 450 units. We’d read that consecutive doses were more successful long term so we were excited to see if that were true.

As usual, the meds began to take effect and Rich began to doze off. The doctor and nurse watched him and his vitals for a while longer. The light in the room was turned off. I read or listened to music through earbuds while he slept. The nurse and doctor left the room, telling me that it would be about six hours and that I was welcome to stay or come and go as I pleased.

Every hour, the doctor would come in, check vitals, check rate of flow and leave pleased. But instead of just checking the monitors, he would go up to Rich and gently place his hand on Rich’s forearm. Before walking away, he’d give Rich’s arm a slight rub and a pat. Satisfied.

I was so impressed by the care. The doctor didn’t rely on the monitors that Rich was hooked up to. He watched the drip of the IV and matched it against the second hand of his watch. He checked his pulse with fingers on Rich’s wrist.

When the infusion was done, the doctor slowly woke Rich up. Every half hour coming in and talking to him to assess his readiness for discharge. With the higher dose infusion, our patient was insisting he was well enough to leave although standing upright was near to impossible.

After a few hours recovering, we made our way to our hotel around the corner, now using a supplied wheelchair through the snow, ice and slush. Room service was welcome as we prepared for the same the following day.

The second dose was slightly more than the previous day. Again the personal touch and the nail on the wall came into play. Again, the gentle waking. Although with this higher dose, Rich took longer to break free of the ketamine. “ACTUATOR!”

Huh?

With a sloppy grin, Rich repeated “ACTUATOR!”

He babbled on and then dozed off again.

Next awakening he began on another tangent… “Literature!”

???

“Literature! Take it… they don’t care… they don’t care!”

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There is no literature in this room but that doesn’t stop our patient. His voice is gravely and comical. He grins wide goofy grins, looking very self-satisfied. This second day, it takes just a little longer for him to come ’round as we wait for the car service to take us back home. The mass transit we took in on Friday evening will not do for the return to Long Island. Our patient is too unsteady.

Now when Rich had the weekly ketamine infusions, that five week period was a lost period of time. By the time Rich started to recover from the wonkiness, it was time for another treatment. With this new protocol, we found that the recovery time is just a few days. And, now, in the year 2019, a full three hundred and sixty-five days later, there has been no need for another treatment. Today we rejoice this special anniversary has come.

Sometimes, old school is the way to go.

Determination and Courage

Maria R. Conklin, writer of the blog Journey of a Tired Heart, writes of exhaustion beautifully and gets to the crux of what it is like to experience a fatigue that only those with a chronic illness or going through devastating treatment for a disease can understand. Those of us whose hearts are with our loved ones on these journeys can only nod and think “Yes, this is what I see. Here is truth.”

What resonates most, as Rich and I inhabit this place where living is a world of bright spots interspersed into a continual fog, are the closing paragraphs:

“Is exhaustion an emotion? I don’t think so, but is there a state of being more intense than exhaustion? I can’t think of an appropriate word to describe it, but it’s the state of physical exhaustion to the degree of leaky emotions. You know what I mean: when your eyes are tightly closed and you finally fully exhale, relaxing every muscle in your body and a warm teardrop slides down your cheek. Then another, and another. Just a few though – and it cannot even be defined as crying.

It’s not crying. It’s all that determination and courage you had to employ to get through the past four hours – at least what is left of them anyway. You let them flow, take in a deep breath and then let it out slowly. Just as quickly as they began, they end. No more tears. Just a sweet, wonderful, lifeless kind of surrender that can only be understood by those who have walked the tightrope between life and death.”

Truth.

Since Rich’s hospitalization in August for that exercise related tachycardia, we’ve been traveling a very fine line between medication and wellness. As we’ve discussed before, the triumvirate of the main heart meds introduced over the summer are problematic for Rich when all three live in our world. Less so than when taken together at the same time during the day, but even the staggered dosing we follow now brings more fatigue than we’ve had to deal with for a while. After months of his energy failing more each day, we wonder for the first time if we’re with the right heart doctors. We try not to despair.

Unlike all our previous journeys, our goals are now ambiguous. We know that we’re not optimized on heart failure medications. But what is optimized? We’re told we’re on the lowest dose of entresto. So where do we ultimately want to be on doses? We know that there are variables that make this question tough to answer. How Rich’s blood pressure, kidney function and ejection fraction respond all need to be taken into consideration.

Even well aware of these variables, at this point, the frustration we feel makes us want to shake our doctors and scream “For fuck’s sake! How long are going to continue on the lowest dose of everything and feel like shit?”

Apparently, no shaking and screaming is necessary. Sometimes it’s finding the right time and the right person. We meet, as we do every two to three weeks, with the nurse-practitioner at the heart failure doctor’s office. We discuss wellness and issues. We discuss blood pressure and blood work. We discuss holidays and everydays. The conversation alone heartens us and happens organically when the nurse practitioner casually mentions a dosage goal. This gives us an opening to enquire about the other cardiac meds and get the answers we were so looking for.

We have a plan. We have a goal… or a set of goals. As per the heart failure guru, we want to max out on entresto and metoprolol. We want to adjust up/down/sideways any of the others to optimize heart function. When we hear that those other meds may be, can be, eliminated, we rejoice. If we can stick to two, Rich can once again feel that rush of energy as he did this summer. That feeling of “before cancer” that makes all the difference. We now hope for that goal.

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Blood work is taken. EKG recorded. We wait for the news… can the meds be tweaked this week? And with blessed relief comes the phone call we waited for… raise the entresto. Finally, we’re moving in the right direction. The nurse gives us hope. She tells us perhaps when we see them again at the start of the new year, we can raise it to the next… the last… dose. Other meds have been halved giving rise to more rejoicing. This lifts our spirits and we’re ready to face the holidays. Glad tidings indeed.

Of course, we also brace ourselves. Each dosage change of the heart and heart related medications has an adjustment period that is brutal. It isn’t so much the water weight gain from the changes, it’s more an emotional roller coaster.

It doesn’t last long but seems an eternity when we’re in the middle of it all. Fatigue hits like a ton of bricks. The recliner is the only place Rich can be. And then comes the end of the first full new dosage day. We’re told that Rich’s reaction can be normal but it surprises us each time. He runs through what seem to be drunken manic-depressive episodes every five minutes. On the one hand, he’s laughing, way too much, about nothing and everything in such a way that it becomes a concern. It feels forced and indeed it is, but not in a way that Rich can help. Seconds later, he’s in the depths of despair, apologizing for all this trouble while he tries to maintain composure. And it generally is less than successful.

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During these times, his blood pressure drops… crashing to numbers like 81/41. His gait is troubled and unsteady. The meds are playing and playing hard. Pickles help. They balance his electrolytes and bring up his blood pressure gently. We monitor his BP continually. The night is long and we’re both exhausted by the time we fall asleep. The one saving grace, we agree, is that the morning will have brought better balance.

Rich’s Determination and Courage.

My Complete Awe.

Let’s get this new year started!

Living in a Postscript

A week ago, we woke to the stone edged green patchwork that is the hills of Ireland. We were towards the end of our fifteen day stay; travelling with friends and filled to the brim with life, laughter and love.

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That we are on this trip is miraculous in and of itself. Since Rich’s hospitalizations this year, there has been a big question mark on whether we would be boarding the plane at all.

We began the entresto in earnest while in the hospital. It had been hammered into us that this was THE drug for heart failure. We’ve had difficulties with it but were ready to be on board and do what we could to tolerate and embrace this medication. The positive results by others were giving us strength. The goal was to have Rich on three heart medications to keep his kidneys happy and to help heal his heart. Entresto, Hydralazine and Isordil started slow and easy. Half doses, spaced timing of meds and the slow introduction of each of the super three. We found any two, in any combination, dose or timing was fine. When a third, again, of any of the combo, was introduced, we found the low blood pressure numbers returned, the fatigue beyond bearing. With our heart failure doctor texting and calling, we tried and re-tried the combinations. Finally, we had to come to a stop. Each modification had brought days of unbalance in all its forms. We had one week before we boarded our plane… we had to allow two meds to settle in and hold off on the third. There was no other choice if we were to travel.

Rich was advised to stop his cardiac PT until after our return. And as for our travels, he was told to avoid hiking. Avoid the very thing we went to do! How to not plod through rock strewn fields, along windswept cliffs, by Guinness-colored churning rivers and streams, through changing autumn woodlands? To walk the city streets of the Troubles and in the paths of writers, musicians and artists? We’d have to find balance as we have all along this journey. As we continue to try to find with medications. To temper the eagerness of travel with the realities of the physical heart.

As with all things, Rich welcomes our travels with gladness and intentions to experience it all. We prepare with the trekking poles that saw good use in Iceland… the 2016 trip we took to successfully test our post-transplant travel waters. We laugh that just one letter changes the names of these two countries… as if a simple typo took us from one instead of the other. We continue to pack as wisely as we can. Wind and weather provided for. Plans for keeping to our way of eating as much as possible to maximize heart health. We look for all the variables that may trip us up and discuss modifications that we may need to use.

The itinerary that Arlene and I work through is a wonderful mix of history, food, landscape, food, music, food, architecture and, yes, more food. We try to find an equilibrium between forts, castles, abbeys, tombs, hills, cliffs, stone circles and waterfalls… although we do seem too excited by food! We dissect travel times and try to figure how long we’ll spend where. We wildly miscalculate our interests but even that ultimately becomes part of our adventure.

With Kevin steering on the wrong side of the car, and the car on the wrong side of the road, we make our way around Ireland. We lay our heads mostly in country-side B&B’s and castles at night. We meet and chat with fellow travelers. We enjoy the music of the pubs, share experiences with strangers and find we keep the memories of all we’ve met with us on our trip. Songs follow us in our travels. We embrace the Céad Míle Fáilte… the hundred thousand welcomes we experience. The lilting cadence of the Irish speech offers us surcease like a lullaby.

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We have a few reminders of health issues along the way. Despite our best intentions, it is not easy to keep carbs low in a country where root vegetables reign and salads are not the norm. Where time differences can be felt, where landscapes are rugged underfoot and where excitement overcomes caution. The northern Wild Atlantic Way tests Rich and with a few exceptions, he comes through unscathed. Our pace is more measured, and I keep an eye on the small cues of distress. A few unexpected hillside trails cause us to take a thing or two off our itinerary and offer us instead time to relax or enjoy some views we otherwise may not have found. A bit of weather meets up with us as two storms, Hurricane Helene and Storm Ali clash above us and buffet us around the Slieve League Cliffs. The sea was swept up the 1,972’ high mountain cliffs in a flume of spray and holding a camera still in the 100mph+ winds is near to impossible. As Arlene says “we could have come on a beautifully sunny day and had a wonderful time and taken great photos. Now we have a story!”

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A story. Our story. Stories intertwined with friends, family and those unknown that spread like a web and embrace us.

Two weeks yet also too soon we’re back home. Time changes once again. Congestion begins. Rich’s chest is heavy.

Is this a bug that Rich’s still-compromised immune system has picked up? Is it a response to the too-many carbolicious meals? Is it too much fluid from a tired, and so less efficient heart? Lasix is boosted, rest is sought. We’ve been too long without an infection. We’re not ready to travel that road again.

Tonight we plan, for the first time in the week since our return, to enjoy the photos we took and relive the goal reached. A magical respite. Years in the making, we’ve now, with a little help from our friends, sailed the clear blue waters, walked the high cliffs, strolled the country lanes, and sang the old songs of a welcoming land. Always will these days be in our hearts.

Postscript
By Seamus Heaney

And some time make the time to drive out west
Into County Clare, along the Flaggy Shore,
In September or October, when the wind
And the light are working off each other
So that the ocean on one side is wild
With foam and glitter, and inland among stones
The surface of a slate-grey lake is lit
By the earthed lightning of a flock of swans,
Their feathers roughed and ruffling, white on white,
Their fully grown headstrong-looking heads
Tucked or cresting or busy underwater.
Useless to think you’ll park and capture it
More thoroughly. You are neither here nor there,
A hurry through which known and strange things pass
As big soft buffetings come at the car sideways
And catch the heart off guard and blow it open.

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