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!

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

It is a truth, universally acknowledged

So begins Pride and Prejudice. In the BBC mini-series Lost in Austen, the female lead begins the story with the same phrase…. It is a truth, universally acknowledged…

But, being obsessed with all things P&P, finds herself in what she calls a post-modern moment and in many ways, it disturbs her. She is to try to keep the story going as Austen wrote despite the fact that she seems to have switched places in time with Elizabeth but as herself and her very modern presence sends the various story lines spinning off in unforeseen and unwritten directions. New truths develop.

We’re finding unforeseen circumstances and truths following us on our current journey.

And the last few days, truths have been coming at us a little more strongly than one would like. As Rich and I walk the halls between specialist visits, we overhear the PCA telling a nurse “… but you aren’t going through what SHE is going through. That’s the difference.”

When we’re in these rooms in these halls in this hospital, it’s very easy to forget, or ignore, the journey that others are on. And that their outcomes may be very different from what we are experiencing. Or they are your possible future. The remarks of this one PCA strike home. None of us knows what the other is going through. There are similarities, there are strengths and weaknesses that affect outcomes. There is the way each situation is approached that can impact one’s stay. Or one’s leaving.

The reminder of compassion and patience is one that is needed right now as well.

This is a hospitalization of waiting. While the leads taped to Rich’s chest are gathering data, Rich himself has little to do. As the v-tach leaves no blips of pain, no stumble of the feet, no dizziness in its wake, the wait seems pointless. But it’s necessary. It is a truth. We must have patience. As Rich feels nothing during the v-tach, there is a truth to his health that we have not, til now, acknowledged. There is a danger there. We have to recognize that it exists. Waiting. Lurking.

Day two and our Heart Failure doctor brings us more truths. Entresto, a medication that did not sit well with Rich and stopped after a few days, is to be started again. We’re hesitant. We’re not convinced. And then she hits us with a solid truth. Humor has left her eyes. Those eyes bore into Rich’s. They will not be ignored.

“People DIE from the heart condition you have. They DIE. Not YOU. Not on my watch. We will find a way for this medication and we will find it NOW. Waiting until you return from Ireland is not an option. We can’t wait that long. This is your LIFE.”

Yes ma’am.

She is not to be denied! Her truth, our truth, cannot be denied.

Having had issues with this drug, we uncharacteristically agree to stay overnight so that Rich can be monitored and his reaction gauged so that dosage intervals and the timing of other parts of his CHF cocktails can be modified to bring the best possible optimization of all meds. That is our goal. Once we reach that optimization, Rich will need to be on these doses, yet to be reached, for three months. At that point, more tests, measuring heart function and ejection fraction, will determine if the internal cardiac defibrillator will be needed. For now it is too soon. Despite the v-tach, it is too soon in the process.

That we have chosen to stay rather than self-monitor at home, is unusual for us. The truth is, this medication scares us. The side effects hit Rich hard. They don’t afford good quality of life as they were taken before. Our ability to take this home and travel through it on our own doesn’t sit well with us, though it is offered to us as an option. Our doctors know us well. But we feel this truth that they have so eloquently urged on us… We need to be here now. The timing of when this medication is to be taken and when the others should be dispensed is modified. We need to follow this protocol as much as possible. No longer will Rich be able to tip a handful of meds into his palm and take them en masse. Patience. Your truth now guides this new process… we need to stagger meds and avoid overlap for optimization.

We give in to the sleep that is so needed. But as in all hospitals, the time to wake will come soon. And repeatedly. There is a price to allowing others to carry your burden. It is a price we gladly pay this night. The truth, our truth, is that we gladly hand this burden to those who do have our best interests in mind, although their plan isn’t always what we wished. They don’t know what we are going through, but take on the responsibility so that we can rest. For now.

The morning’s tests and data will give us a new truth. We hope it is one we can swallow!

PT ER CHF VTACH

Every two weeks, Rich visits the office of the heart failure doctor and has blood drawn and vitals taken. The powers that be take the data, swirl it into their magic ball and modify his medications to bring them to where they need to be. Care has to be taken to protect his heart from sudden bursts of meds but at the same time optimize them. Last time we were at this office, the doctor was nearly giddy with Rich’s progress.

And now, three days a week into the month of October, Rich carefully places the color-coded leads, following the diagram posted, that will allow the staff to monitor his heart rate while he follows the protocol that was carefully set up based on his stress test results. The first day he starts by stretching and is immediately asked to stop. It had set his heart to racing. As he continues, he’s advised to add some salt to his diet… his blood pressure is too low. We walk a fine line to find our balance.

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Even the days scheduled are carefully calculated: days of rest and days of exercise. The rest is needed. Moving his body for extended periods like this are not easy. Energy can be in short supply.

It is not only the EKG reports that are so carefully checked, stress levels are another part of the equation to find the balance we need. It’s hard to quantify stressors in life and, as is Rich’s way, he uses humor to lighten what stress sometimes falls too hard on his shoulders.

Such has been our pattern since he was released from NSUH in June. Until yesterday. Following a fun weekend upstate with cousins, Rich went to his cardiac rehab, popped on the monitoring leads and began his routine. While on the treadmill, he was asked to stop… he was in v-tach… his heart going out of rhythm. EMS were called and Rich transported to the ER where I met up with him.

Blood work and vitals taken… history told over and over again. And then the waiting began. The plan is to be monitored and data gathered on what his heart was up to. To see how the electrical pulses that make the heart beat are doing. Rich feels none of the changes. The day drags. We’re admitted to a room for the night… monitors and AED pads stuck all over Rich.

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The nurses here are concerned with Rich’s blood pressure, the results of his bloodwork and any other number of tests. In some ways we feel like we’re taking a giant step backwards. Meds withheld and additional tests done. The wonderful work of the last two months seems to be suddenly dismantled. We’re disappointed that none of our doctors have stopped by with information.

Based on bits and pieces of conversations in the ER, we’re thinking they are leaning towards the installation of an internal defibrillator. Since Rich doesn’t feel the v-tach happening, it would give us comfort to have that done.

Now we wait for the doctor’s rounds to find out which way the wind blows. If our stay is longer than today, we’re hoping it includes progress forward.

In the meantime, we keep walking the hallways, trying to keep moving while we wait for answers.

Bringing the touch of health and gladness

On Facebook there is a group of scouters that have wonderful memories of a special Boy Scout camp called Treasure Island. Truly a set of two small islands, situated on the Delaware River, it is indeed a treasure that lives in the hearts of anyone who has camped there. As the home of the Order of the Arrow and amongst the oldest of the scout camps, it was always well steeped in the traditions of summer camps. The dining hall the most quintessential we’ve ever been in. On the wall there was a brass marker showing the height of the water level during a flood. We first went there as leaders from Carle Place Troop 305 in the summer of 2004. Rich had just completed six cycles of RCHOP…. our experience with cancer our first time around. He had mourned during that time the trips and events he was unable as Scoutmaster to attend. We were thrilled to once again be sleeping out of doors. This camp revitalized Rich and confirmed the healing taking place.

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2004 TI – Our Troop retiring the colors

TI abandoned. Too many times has the Delaware risen to flood the buildings and grounds. The financial decision by the council was to close it down. Also found on this fb page if you search back, are photos of times past… a camp filled with boys from all over the country, counselors from all over the world. But lately and sadly, the true present. Abandoned.

This past weekend, a group of scouters made their way to TI. The new series of photos being posted are now of the result of a weekend of what the OA calls “Cheerful Service.” One by one, the buildings are being cleaned of the detritus of what was left behind and what nature brought in. Trails are being cleared. A rebirth.

His numbers are all improving, and like TI, Rich is once again being reborn. The swan catheter in his neck is removed. IV fluids are stopped. All meds are by mouth. We’re moved to the step-down unit. We walk the halls, each lap trying for better speed.

Like TI, we’re ready to be what we once were; perhaps with a few slight changes. There is always a time in the hospital when everything is done that can be done. You’re too well to be there any longer. Everyone admits you look great. Your numbers are great. But always doctors prefer that one more day to make sure, to be certain. You fight against it. An internal switch is flipped and it’s time to go home. You’re no longer content to be here. The next few hours will confirm for us which way the doctors will decide.

We have been walking the halls, proving our fitness. We find that may have become a problem. Rich challenges himself to walk a quick pace. He does well and his breathing keeps up with him. The walking does raise his heart rate… will this be problematic for our release? The ups and downs and questions continue. A new med was added last night. We hope the monitoring this morning will be enough. Before we can get ourselves nervous, the nurse stops to ask about inhalers and nebulizers. They still appear in the computer but the truth is, Rich hasn’t used them since his first full day in the hospital. These are now in our past. We need to remember how many answers we’ve gotten and much improvement has been had since we were admitted here… in truth since this past March. The final piece of the four-year puzzle of continued health issues seems to be in place now. And that is something to celebrate. Adventures await!

To get to TI itself was an adventure. Along a roadside was a small clearing with a sign announcing the camp. All our gear would need to be humped down the embankment’s steps. There we’d load it, and ourselves, into the waiting flat bottom barge boats that would take us to the island. Once across, we would hump ourselves and our gear up to our home for the next week. Magical from start to finish.

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2007 Barge to TI

In 2007, after another flood, our troop spent a week again at TI. Then it was a mere shell of its former self. The following year was the final summer camp season. The property has now been sold and will be turned into a family camp. Scout volunteers work to keep the buildings in a condition that may allow them to be used once again. One day we hope to cross that river in those flat bottom barges as we did before and enjoy its new incarnation.

Of the TI camp song, our favorite verse was the second:

We have known the woods that grace thee,
Trace thy meadows o’er.
Learned the flowers that bloom upon thee,
Watched the birds that soar.
Often have thy waters blessed us,
Off the sun’s bright smile,
Brought the touch of health and gladness,
Dear Ole Treasure Isle

But for now, in a little more than a month, we expect Rich to pack light and pack smart and travel upstate to spend a few days Cub Scout camping with our oldest grandson. There won’t be the uniqueness of a camp straddling two states in the middle of a river, but it will still be magical.

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2017 Cub Scout Camp

 

When Cardiology Meets Obstetrics

When we were pregnant with our third child, we were told to attend a refresher Lamaze class as ten years had passed since our last pregnancy. Figuring a free tote bag and some diaper coupons would be worth it, we dutifully went. In the middle of the class, the nurse leading the group told us about a new doctor in the practice. Fresh off the obstetrics assembly line, no one wanted to give birth on his watch. They encouraged us, however, to make at least one appointment with him as we neared our respective due dates. Meet the man in case he is on duty when your water breaks.

We did and as we walked out of the office, we said to each other, if this was our first pregnancy, we’d be scared shitless! This guy gave us every worst-case scenario, told us to get every test in the book. He had new knowledge and he wanted to share it…he couldn’t help but share it. By the time we left, there was the potential for a real freak-out. He led with disaster.

As fate would have it, he was the doctor in the practice that was on call and ultimately, the guy we were glad to have by our side when an emergency c-section was needed. His gentle yet sure manner was a perfect counterpoint to this new development.

Today we have seen more specialists and had more procedures than one would think possible in one day.

After a full afternoon of waiting for the angiogram to be done Wednesday, it was finally our turn. The expectation the doctors (and we) had was that the pesky left bundle branch blockage would show to be a pesky nuisance, the root of all discomfort. They’d clear up the blockage, pop a stent in place, and voila! Our ejection fraction would adjust itself from its normal 40-45% from the early chemo days to a healthy and normal 65% and we’d be running marathons in no time, despite the fact that we don’t run marathons.

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Waiting

We do, however, have one of Rich’s original goals in place… we’ve booked a trip to Ireland in September. In three short months we’d be, with friends, experiencing the often wild and awe-inspiring island country from top to bottom and round again. Waterfalls, rivers, mountains, ocean cliffs, ancient ruins, pubs, villages… the stuff of literature and dreams. With Arlene and Kevin doing the driving and, as before, our support and companions, we’d see our goal come to life. We find we’re telling everyone so they understand our personal goals… This little tune up of ours, is merely a tune up to complete our preparations before we’re flying off to the land of my fore-father’s birth. And one of Rich’s dreams. Will the results of this hospitalization affect those plans?

Rich came out of that operating room and, test not quite complete, we’re admitted for a stay in the cardiac unit. Our tune up is not so quickly done. Rich’s heart has had since March a mere 15-20% ejection fraction. Time has not improved it. There is fluid in the pericardium which is the congestive heart failure that was suspected. But not only the left side of his heart is weakened. The doctors are dismayed to find the right side is weakened as well. The low blood pressures he has been experiencing, this angiogram and the tests that are to come will show that heart failure is the right description of what he has been experiencing. His blood hasn’t got the oomph to make the circulation effective… the pump is broken. Our own cardio doctor is recommending that we be seen here by the cardiomyopathy group.

Rich has been given a double dose of Lasix and admitted to the cardiac ICU floor; the CCU. Once more, he in a hospital bed, me in the standard vinyl recliner, and we settle in for the night, looking forward to the morning rounds where we’ll get some answers. As always when in crisis, we’re glad to be where we are.

One of our first doctors to stop in is from the cardiomyopathy group. She gives us a brief rundown on Rich’s condition and how it applies to her specialty. She applauds and approves the ketogenic way of eating we do. She will stop in later in the day.

When we do see her again, her demeanor has changed. She begins discussing what our options for treatment will be for the heart failure Rich is experiencing. Her opening is about heart transplants. Wait, what?! We went from expecting a quick stent procedure to ripping out his heart? She discusses the benefits of having the transplant assessment done in conjunction with the other evaluative testing Rich is undergoing in order to have that all in place.

While it makes a certain sense, it reminds us of that obstetrician 26 years ago who felt the need to give us all the doomsday possibilities, so eager was he to impart his new-found knowledge. Instead here we are listening to grant money, no cost to us thanks to a grant and adding to the growing prestige of the heart program in this hospital. Wow, we hit the jackpot! She ends with “but of course, our goal is to leave you with the heart you were born with and find other solutions first.” Alrighty then. Better. Because a groupon for a transplant is just too bizarre.

We listen to the rest of the options including a heart pump which would entail another four week hospital stay or simple medications… the last being the treatment of choice. Visions of Ireland begin to fade.

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First try for swan catheter. Before it turned into a Dexter set.

In between that first and second conversation are the tests, procedures and consults. His ejection fraction still at 15% is confirmed. Next, they stop his current heart meds and begin with Milrinone which is to help the contractions of his heart so the flow of blood will be stronger. After a few hours to let the meds begin to do their work, they feed a swan catheter into the artery in his neck. They will use this, while it is all hooked up to a monitor, to measure his heart output or how well the pumping action is improving. Improvement being our person preference! Twice they try and fail. His room, set up as a sterile operating room, looks like a crime scene. It’s decided that they will go to the cath lab to use some radiography to guide them along. Turns out some scar tissue from his chemo port needed to be cleaned up and then they were set. We thought what he was getting would look similar to the triple lumen that was used in the stem cell unit. Discreet. What he now sports looks like an array of medals on epaulets; his shoulders dripping with access points off a slew of IV tubing. And the catheter’s end, coming out of his neck, forms a swan neck type curve and connects to all these medals of honor.

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just a portion of the medals of honor

There are x-rays, sonograms, attempts to insert an A (arterial) line in Rich’s arms for additional monitoring. His veins are too compromised due to his condition. The odds are they will plump up when the pulses are improved. It’s decided to wait 24 hours and try again.

With all the invasive procedures and contrasts used for helping us to find answers, as well as mentally processing the unexpected diagnoses and possible treatments, the night is uncomfortable on a number of levels. Sleep eludes us. But there are signs that these new meds are working. Belly bloat way down and breathing eased. It’s a busy night and we hope we’ll have time for rest in the coming day.

The good news comes early in the cardiac care unit. An x-ray is needed daily to check the placement of the catheter. The readings that are coming from the monitor hooked up to the swan catheter are more than we could have hoped for. The Milrinone is helping Rich’s heart and besides the expected changes that will bring, we’re thrilled that his oxygen levels, which had been anywhere from 80 to 100 are found to be a full on 100% O2 saturation without any supplemental oxygen. This truly proves that so much of what our pulmo doctors have suspected.

Finally, the daily weigh-in. In 48 hours, Rich has lost twenty pounds of water weight. The fluid around the heart in the pericardium and in his belly is lessened. Hydralazine is added to help open the veins to let the improved output flow.

The downside to these meds are that they give his creatinine levels a slight rise. All tests have shown that his kidneys are clear of any issues other than damage that is also chemo induced. Our nephrologist feels that the steady elevated numbers have been stable since his cancer treatment so our patient’s higher than the norm numbers is something we’ll monitor but will not interfere with. This added blip from the new meds is explained by her in a way that proves her compassion. “Our main concern is Rich’s cardiac health and his personal well-being. If his comfort and daily life as well as his cardiac health needs these medications, we can be comfortable with this new number for his kidneys.”
It’s also felt that, like his pulmo function, his kidney function will ultimately head in a healing direction and thus better numbers as his cardiac function improves. That this doctor is looking at the whole picture of living life confirms so much for us. This team of caring health professionals have blessed us with their knowledge and persistence.

The plan now is to tweak medications to optimum levels, currently adding in and create the balance Rich needs. Once those are set up using IV infusions, we’ll then transition to oral meds for home use. Making sure heart and lung function maintain improvement and reach the goals we need to go home is the next step. Monitoring and less and less invasively through the weekend, we expect optimistically to be here til mid-week.

Lastly, our cardiomyopathy doctor, the one with the heart transplant conversation stops by again. She’s thrilled with the turn-around that has occurred. Before she leaves, she enthusiastically said “Remember that horror we talked about yesterday? Forget it. Forget it all. Those needs are good and gone!”

Tonight we expect to sleep soundly.

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