To Be Like A Lotus

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Our little pond in our tiny yard has been a source of calm in our lives. Each year we patiently wait for the leaves of our lotus to unfurl on to the surface. Later the flowers poke their buds up and spread their petals towards the sun. These same flowers retract under the water at night.

It is because of this rising from the mud that the lotus plant is associated with rebirth. From darkness, beauty. They teach us patience and show us we can rise above the miasma that sometimes finds us.

The past few months have seen us anywhere from the summit of mountains to the muddy muck of ponds. While our personal highs and lows have not been such a roller coaster recently, there have been moments where they felt that way.

Rich started his latest ketamine treatments in the middle May and went on into June. He had a small bout of pneumonia somewhere in the middle. Some antibiotics and six-day pack of medrol (steroids-lite), nebulizing over and over for months to come and we figure we’re good to go.

At the end of June, we reached a summit. Literally and figuratively. We set off for Maine by way of New Hampshire and Sturbridge Mass, singing in the car at the top of our lungs. Rich was at the wheel for the first time without another driver in the car to relieve him when he got tired. No more belt and suspenders… we were on our own.

Sturbridge has always been a place of peace for us. So many wonderful memories of family weekends… quiet winter mornings and hearty meals by the warmth of the fireside. Newborn animals in the spring, kiln fired pottery in the summer, the change of seasons and a chance to slow down. This was now just an overnight stop along the way as we traveled north, but, as always, it refreshed our spirits.

Rich’s feet were now renewed with ketamine and MMJ keeping the neuropathy at bay. The open road lay before us. The fog lifted from the White Mountains of New Hampshire as we drove, the peaks revealing themselves slowly through a haze. Adventure was in the air. Our plan for these next two days? Mountains… glorying in the mountains. We were not climbing and very few trails had our names on them.

Music blasting, open road, singing at the top or our lungs

As has been our need these last few years, we’ve made adjustments. On this day, we were traveling via train through the valley of the White Mountains and into the Notch. We would sit in a dome car, sheltered from the intermittent rain, and watch the waterfalls, gorges, woodlands and vistas through the windows of the vintage rail car. We would marvel as the walls of the notched stone closed in on either side before opening once more to the valley view below. We ate in the period dining car, reveling in the flavors and views.

The following day we found ourselves on the summit of the tallest mountain on the East Coast… Mt Washington. Here, the highest winds on the planet have been recorded. The old summit observatory and stage office displays a plaque on its exterior: 231 Miles Per Hour. We are awed to see this same building has thick chains that go up and over the roof in three places… secured into the granite to keep the roof, and the building, from flying away.

Despite our gear, we did not hike to this mountaintop. Rich’s feet and lungs, though so improved on his current regimen, are not up to the task. Instead we travel as others have for almost 150 years, we take the cog railway. Our fascination with trains has not prepared us for the wonder of this ride. It is not the view that captivates us. We can barely see through the clouds as we ascend; indeed, the fog itself rolls through the open windows of the car. It is the engineering that brings us such delight. What imagination!

With this help, we stand in the mist of the clouds at the top of our world. And we grin happily as if we had walked every step of the way. Success!

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Our weekend continues and we’re ultimately back home, tired but content. We have not seen the stunning landscape that the telescopes promise at the top of Mount Washington as the clouds never rose enough and we could barely see three feet ahead. But the journey itself was the prize. This could never have happened within the three years since Rich’s diagnosis.

The wheezing, though, never quite went away from the pneumonia. We check in with our pulmo doctor who recommends, cautiously, prednisone. A small dose. Rich agrees… it is time to hit this with all we can and get it gone once and for all. And so once more our beneficial bane is back with all its accompanying side effects. The second day on this med and Rich has had enough. The doom and gloom of the adrenals is hitting and hitting hard.

The morning of the third day I leave what sounds like a rather hyperbolic message with the pulmo doctor. Quality of life is gone. We’re in the muck. She know us.  She know we don’t exaggerate. We’re to stop prednisone immediately and to continue with the regimen of nebulizing. No need to wean off as the dose was so small and for such a short period of time. We’re relieved. Ready for that lotus to push through and blossom once more.

That relief is short lived. The two days later Rich is on his way to pick me up at the train station and his eyes are full of tears. He admits, it’s been a rough day. When we get home, the truth of that statement shows how inadequate it is.

Prednisone has many side effects and we’ve dealt with most. For whatever reason, it now manifested itself as it had never done before. As he drove down the street, Rich felt an overwhelming urge to open his car door and jump out into traffic in front of a moving truck. Again, his strength leaves me in awe.

The psychosis that prednisone can inflict has hit hard. He fought back and won. The doctors are stunned to hear this latest development. And yet, they nod. It’s a known problem. We spend the weekend on tenterhooks to keep this demon away.

By Sunday, in all ways, we can breathe a sigh of relief. This has passed us by. And so, we spent a weekend a month later celebrating Rich’s third year post-transplant. The roller coaster continues, but we honor our journey to date and give thanks for the life we live.

One of our celebrations found us in an apartment in Brooklyn attending class. Before us were a selection of mostly primary colored acrylic paints, some brushes, and canvases with dried lotus leaves applied. We spent the day mixing colors, some ending up the same color as the mud from which these lotuses grow, and applying the paints to our textured canvases. What a reflective and yet spirited adventure this was! We hang our masterpieces in our home proudly.

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A few weeks later, we spend some time once again the mountains, this time in the Catskills of New York. Our weekend is one of appreciation. Appreciation of the journey we’re on, the light and life we’ve been given and the beauty around us.

Some of that beauty in the amazing meals we enjoy by chefs who know what they are doing. Some in the architecture of mansion along the Hudson that we visit. Most of the beauty we celebrate is that of artisans, certainly more skilled than ourselves, who show their work at a juried festival we attend.

On our way back to Long Island, we stop at the botanical garden in the Bronx where we enjoy the artistry of Chihuly and of nature in bloom. There we find, within the garden’s, ponds displays of lotus, rising through the murky water, from their roots in the muck of mud, to reveal the light and color to which we humans can only aspire to replicate. From the depths comes beauty that raises us up to the light.

And for that reason we continually celebrate.

Rebirth.

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

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

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

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

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

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

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

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

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

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

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

What’s-a matta you?

14138074_10153343859622824_8850222710769546087_oWe look out the bank of windows that are at the back of the home we rented for the week. At the end of the dock are our kids and their kids. Across the water, the sun sets behind the hills and the clouds sending rays of light and bands of colors into the sky. This has become a nightly ritual of appreciation. Drinks are poured and seats found as the time comes close. The littlest ones may spend just a little more time in the water while their parents enjoy the changing light. There is a peace that speaks to the soul. It gives us comfort.

On Canandaigua, we have all come together and the week is full of food, drink, laughter and family. Moments of joy are found everywhere. When two year old Bean sings the alphabet song to his baby cousin who smiles and laughs at the attention. When my mom is cooking in the kitchen with her grandson-in-law helping to lift and carry. When Richard tosses his nephew high in the water and Boober comes up out of the lake with a huge smile. When the game of Monopoly just never ever seems to end. And if it does, it will not end well. It never does.

14115514_10153343861857824_44245202119329942_oThe house hums with joy. Sun, rain, stars and clouds… we watch it all from hammocks, chairs, kayaks… fireworks greet us up the lake the first night. On the last, we give thanks. The next day we are to leave the lake and it is also the second birthday of Rich’s stem cell transplant. So the last night, in gratitude for the support we’ve had and the care we’ve been given as well as for his ever- improving health, we each of us send out a small candle lantern onto the lake as the sun is setting. One by one they bob away from the dock. One additional lantern is sent out for all of those who are on their own paths to finding health with prayers for it to come to them. The little lights glimmer as the lake begins to turn golden from the reflection of the sky. Our last sunset at the lake.

All week we had been having another celebration of sorts. The cymbalta that Rich had started had reached a plateau of helpfulness halfway through week two of use. The generalized neuropathy was improving and the spiking pains had lessened, but not to the extent we had hoped. We did not want to spend the week at the lake with exhausting pain as such a companion. We have an appointment to speak to a new pain group about ketamine, but with only a week to go prior to our departure for our trip, we needed a more immediate solution.

Medical marijuana was next on the list. New to New York as a legal option, there was little on the internet and what was there described a drawn out process. We had days before we left. Grace was on our side. We called our stem cell and pain management cohorts to inquire only to find that yes, our doctor was approved by the state to certify patients for the Rx. The response was near to instantaneous. Via email, we received Rich’s certification. We logged onto his NY State account that had been opened years ago for student loan applications. On the appropriate tab, his certification number was entered and the rest of the fields populated. We hit submit. And were approved. Within twenty minutes of our inquiry, we were approved. In two days, Rich would receive his necessary state issued card and we would make an appointment at the dispensary to fill the prescription.

In a rather nondescript medical office building, we buzz the intercom at a rather nondescript door. Rich is asked to hold his ID to the camera; we’re let in. The men in suits at the front desk resemble either bodyguards or hit men. We remind ourselves this is legal.

After a consult regarding options and procedures, we left with a few bottles of what was basically a pot-laced syrup similar to cough medicine. Rich began with the low dose as recommended and which seemed to have a slight effect within an hour. At about three hours, it seemed to have increased the pain relief tho’ it wasn’t a complete fix. We didn’t expect it to be since we’re just starting on the lowest dose. But it was an excellent beginning.

In a few days, we found we needed to change from the syrup… the amount of sugar was wreaking havoc with Rich’s stomach and he blew up like a balloon. We were able to consult with the dispensary’s pharmacist and nurse over the phone and it was decided the pure oil would be a better option. And so far it has been. Each increase in dosage has had an effect the first day with feeling drowsy… dopey. After that, it continued to do its job with better effect and a clearer head.

We do meet with the ketamine group… our special K’s. They give us more complete information during our consult than we had gotten from our pain management cohorts and it is less intrusive than originally explained. Rich would go once a week for a five week period, four hours per session for a ketamine infusion. He would be monitored as if he were under anesthesia, which in effect he would be. If necessary, he would go back after six months for a booster… a single four hour infusion. While the medical marijuana has less potential side effects, Rich has to take it in a timely manner three times a day for it to remain effective. And, to weigh all variables, we do have to consider that the potmeisters to not accept insurance. But the ketamine treatments would be covered. And, most importantly, the success rate is very high.

We decide that once the insurance approval process is completed, we will give the ketamine a try. The special K group requires Rich to have his cardiologist give his blessing as a precaution based on his heart issues during chemo. We will always have our reefer madness as a backup if the side effects are problematic and the infusions are stopped.

14102969_10153343860012824_5070539038206384639_oIn the meantime, our nights are less interrupted by the painful spikes of neuropathy. Instead, our week at the lake was spent, after those splendid sunsets, with our littlest grandson sleeping in the same room with us. As we drifted off each night, and looked over to him sleeping, we couldn’t help but smile at the lullaby that has once more filled our family songbook. It’s the same one we sang to this little one’s father. Life truly comes full circle.

And we accept its life lessons with gratitude and joy as the ditty runs through our head…

“What’s-a matter you? Hey! Gotta no respect What-a you t’ink you do? Why you look-a so sad? It’s-a not so bad. It’s-a nice-a place. Ah, Shaddap-a you face!”

“Second Star To The Right and Straight On ‘Til Morning. ”

DSC04152We danced. The culture of dance as an expression of celebration, rituals, a form of entertainment has existed in the mists of the ancient world. Dance survives, it sustains, it endures within us all today. And so, we danced. For the first time since Richard’s wedding two years ago, we danced. A simple thing. Two people, rhythm, touch. And yet, a long time coming. We danced at a wedding again while the stars reflected in the pond below the windows. Like we could continue on, as Barrie’s Peter Pan directed, straight on ’til morning.

One of the most persistent effects of all the beneficial poisons Rich has had over the last two years has been peripheral neuropathy. That pain that sometimes resembles the pins and needles of a foot fallen asleep, sometimes the stab of a knife, sometimes burning, sometimes numbness. The usual first line of defense is Neurontin which has worked well for him in the past. For all the nastiness that prednisone has presented, it was effective in masking the pain of PN. As Rich weaned off the steroids, the neuropathy came back with a vengeance. Added doses of Neurontin brought balance issues. For most of a year, we’ve been straddling the fine line between pain and balance. Sometimes with little success for either.

Our stem cell guru, as always, listened well and offered a referral to the center’s pain management group. In prep for the meeting, we sat with our red book with our meeting notes, meds history, calendar and the jottings of “between times”…. Those odd bits that take us by surprise between appointments and are worth noting for better or for worse. With that in hand, we put together a timeline of the ups and downs of neuropathy on our journey. We had an appointment and went prepared.

Again we’re thankful that the care we receive is coordinated through the health care system that is now called Northwell. Rich’s files are all accessible through their computer and very little of our story needs to be told. Our new cohorts have read up on us and we only need to fill in the blanks of our timeline: what worked, what didn’t, the best, the worst, where we are now.

It comes as no surprise since we’ve researched a bit on our own, Cymbalta is going to replace the Neurontin in our arsenal. This anti-depressant has had excellent results with chemo based neuropathy. Not the first time that an off-label use of a drug has been beneficial.

Our cohorts are not yet done. One of our observations is how willing they are to take their time to ensure we understand the plan completely. Their experience with patients in distress serves us all well. Despite us having been squeezed into a slot for this appointment, the team deftly manages two patients across the hall from one another without either of us feeling like we’ve been ignored. Before we leave, we’re told of further options should this one not work. We laugh to find it is an anesthetic used often for horses. This whole journey has had a bit of a Mad Hatter’s party about it.

Ketamine is used in lesser doses for humans but carries some risks. For our purposes, the doses would be even smaller still and administered via IV over a five day period every three months.

Both Ketamine and the Cymbalta have anti-depressive effects. Rich is currently still on Zoloft to counter the depression of his adrenals from prednisone. We’ve tried to wean off but it is still early days yet. It has taken at least a year post-steroid to be able to eliminate this drug in the past. We expect at least the same again, given the duration he’d been on it. But that brings up the question as to the conflict between meds.

Our team wants us to keep the Zoloft in our bag of tricks for now… until we’re sure the Cymbalta will do the trick, the powers that be don’t want to leave him without a needed medication. The doses are low enough and scattered during the day to avoid any problems. Neurontin is out and Cymbalta is in and Zoloft is continued.

And so we wait. We’re told two weeks should see a significant improvement. The first twenty four hours are a little rough. Outgoing meds have left the building and the new tenant has not yet settled in. The first night is long. The second is a little better. But then within days there are negligible results; but ones that make our hearts sing. The off-balance feeling that Neurontin brought with it is gone. The positional vertigo is still present but the added balance issues that were med-induced have faded away.

As the week goes on, more feeling comes to Rich’s feet. There is still a cotton-wool feeling between the toes that is not resolving. And when the barometric pressure indicates a storm coming through, the stabbing pain can still make him jump. But there is improvement. The frequency and the intensity has lessened. We’re now at a two week mark. Is it enough? We have another couple of weeks to go before we meet with the pain management cohorts again. We look forward to our discussion.

In the meantime, Rich’s pace has improved. And the best comment of all, the one that makes my eyes sting and my heart skip a beat is when he comes into the kitchen and says “I’m walking with confidence. I don’t need my cane.”

Confidence.

It is advised in Peter Pan that“The moment you doubt whether you can fly, you cease for ever to be able to do it.”

I’m sure if we can now dance, we can fly.

Deportation and Unassimilation

225672_10150182626467824_3242997_nAs we sit on the swing by our little pond, we watched the butterflies flitting about the garden. A copper-roofed birdhouse swings in the breeze. From under that little roof bits of dried grass, yarn and the flotsam and jetsam that make up a finch’s nest have been pushed out the side. Our occupant has begun re-arranging the furniture to prepare for the next batch of eggs.

We too have been busy in our house; spring cleaning has been underway, little by little, since we returned from our trip. One by one we’ve tackled each room. Donations have been picked up. And then there is our box. The bigger box that has held any number of elixirs, potions and pills that have been with us on this journey.

Filled to the brim, it’s time to say goodbye to many of these little miracles that provided relief and kept us on track. It is bittersweet to go through this box. We say a small thank you to each as we set it aside for disposal. There is a feeling of ceremony. Each bottle brings back a memory. We thanked thorazine for quieting the barking seal that the hiccups brought and we remember the overnight chemo where we recorded the sounds that reminded us of San Francisco’s piers and then could not stop laughing when we played them back. Which brought on more barks. Which brought on more laughter. What a catch 22 that was! We thank the tincture of opium which our gastro guy called “the plug” for its effectiveness in stopping the months of non-stop diarrhea. This cure discovered too late to allow Rich to attend Nick’s college graduation, but what a wonderful memory of us sharing the moment of him walking across the stage at Cooper Union via today’s technologies. We thank the lasix for deflating the pontoons; gone before we could test water walking possibilities. We thank the ambien for restful nights but mourned the end of the midnight food fests.

And so we continued through the box. One by one taking a moment to remember with gratitude these companions along our journey. And celebrating that they are no longer needed. Mepron,Voriconizole, Simethicone, Budesonide, Emla, Valium, Morphine, Dilaudid, Omeprazole, Sucralafate, Lomotil, Colace, Senekot, Ativan, Zofran, Emend, Pantapropazole, Ferrus Sulfate, Vitamin C, Albuteral, Spironolactone.

The box was like Mary Poppins’ bag which held all manner of items and had an endless bottom. The list continued. On and on we gave thanks and said our goodbyes.

And in time we came to prednisone. Bottle after bottle of varying doses. It has been our bane but it has been our companion too. As part of the chemo cocktails, it not only worked against the cancer cells, but it also helped to keep at bay the worst of the reactions to the other beneficial poisons. It relieved inflammations from the continued bouts of the different pneumonias. It was a necessary evil that we didn’t welcome but we are grateful for what it was able to do.

Of all the medications, this end was the most celebrated. But at the same time, perhaps the most necessary medication of all. And so we thank too those many corticosteroid bottles for their help along the way. And celebrate that they are no longer needed. We visit our stem cell guru. Rich receives his booster vaccinations. It will be a year before we’re ready for the next set. His bloodwork shows that we can now say goodbye to the folic acid. The first indication of a problem as we started this journey was anemia. That we can eliminate yet one more supplement, one of the first, that helps the body with anemia and to grow new blood cells is another indication that we are on the right path.

We are nearing full circle.

Our box is slowly emptying out.

Tomorrow we say goodbye to another stalwart companion. Our One of Nine will be disengaged from the Borg collective. Rich’s port will be removed. Cyborg no more. In preparation, more blood was collected, this time to check the clotting factor. The tube, that runs from the port and protects Rich’s blood vessels from the toxic burn of the beneficial poisons that make up the chemo cocktail, that catheter lines his jugular vein. We prefer no bleed outs. Tomorrow we will be thankful.

The port has been a less painful option for infusions and blood draws. We are grateful but it is time. We’ll say our goodbye with appreciation. Another ceremony. For the first time in two years, Rich will no longer wear the bracelet that identifies him as having a power mediport. He will have been deported. Another milestone.

But first there is work to do. We need to prepare. Let the manscaping begin!

Longest. Ride. Ever.

About twenty years ago, our family found ourselves at Hershey Park. While the older kids went on the roller coasters, I went with Nick on all the rides more appropriate for the three year old he was then. One of which was a kiddie airplane ride where you could control the height of the little plane you sat in as it went round and round. Nick and I settled into our mini two seater and, with big smiles, waited for the ride to start. When it did, I realized that Nick, who didn’t like the motion, had slithered down by my feet. To anyone watching, it looked like I was the only adult on this embarrassingly small ride. There was nothing to do but practice my Queen Elizabeth wave and smile as we went round and round. Every time I tried to make the plane go higher, Nick would start screaming at me as he sat scrunched down by my toes and I had to lower it back to a mere hover. So there I sat, two inches above the ground, a grown woman sitting apparently alone in a vehicle meant for a child no higher than three feet tall and going nowhere really really slowly… waving. Rich, meanwhile was gleefully snapping photos. This was the Longest. Ride. Ever.

Right about now, Rich and I feel like we’re going round and round on the longest ride ever and sometimes feeling just as ridiculous with our precautions as I did that day on that little plane and getting nowhere reeeeeally slowly. We’ve been trying to make changes but it’s hard to think of yourself as a non-patient when every time you begin to increase your activity levels, you end up back in the ER. As we are finding, “Progress is not accomplished in one stage.” Victor Hugo was right when he wrote that.

And we always seem to have a crisis moment after those doctors give us a big thumbs up. After our round of stem-cell-birthday doctor appointments August 27th, we began to look ahead to our F*ck Cancer celebration scheduled for Labor Day weekend. The kids were all coming down from Rochester with lots of family and friends joining in. We were a week away! We finalized our menu and went over the details and started up the stairs to bed. Near the top of the stairs, in seemingly slow motion, Rich began to fall, collapsing in on himself. Shaking, he grabbed the railing and, with me close behind, made it into our room and onto our bed.

Out of nowhere, his temp was 102, his O2 levels 82. Body aches were starting up. Suddenly his breathing was the full symphonic again. The guidelines we have dictate if a temp of 101 or more is not resolved with Tylenol for more than 20 minutes at a time, then we need to go to the ER. All temps should be reported. The O2 levels were problematic. A cough is brewing. If we reported this to the on-call doctor, they would advise to go to the ER. Rich was refusing, putting me in the middle. So, instead of a phone call, it was time for some fast footwork.

First, ignore the phone. Then begin some regimens for these symptoms. Tylenol, Nebulizer, and luckily, a supply of the antibiotic Levaquin is on hand. Shortly, the O2 levels are back up, the temp is normal and we’re hoping the antibiotic is working its magic. We’ll see how the night goes. In the morning, Rich’s temp is still normal. Throughout the day, his O2 levels vary which doesn’t make me comfortable, but he pleads to stay home. And I don’t blame him. The lack of temp indicates Levaquin was the way to go… this is a bacterial something or other that was brewing. With luck, we’ve caught it in time. We spend Sunday resting from the long watchful night and monitoring those oxygen levels that can’t stay in line.

By Monday, there is significant improvement… O2 remains a steady near-normal. We call the pulmonary doctor who isn’t happy we didn’t phone over the weekend but is in accord with what we dispensed and understands our need to stay out of the ER. We agree to notify her with any negative changes.

Now’s the hard part… keeping Rich rested so he’s well for the party. And thankfully he is. “To succeed, planning alone is insufficient. One must improvise as well,” said Issac Asimov, one of our favorite authors. So we improvise by bringing Rich’s Ikea chair (Poang!!!) and ottoman into the garden for him to relax in. Like a pasha, everyone will come to him for the bulk of the day…to greet his guests by getting up and down or standing for long periods couldn’t be an option… he’d be down for the count before the appetizers were done. And our plan works. Most of the day was spent in the chair but as the sun began to settle down, Rich then was able to get up and mingle, stopping at various tables to sit and chat. He only stepped away from the party for his timed nebulizer treatments. It was a triumph for him to be able to spend the entire day surrounded by so many friends and family, all of us celebrating that he’s in remission. Celebrating with gratitude for the support of everyone that helped us with love through the darkest of times and to find joy in the lightest. Those who were there in spirit followed us as well. It was magical.

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On Monday, Labor Day, we rang the farewell bells as we watched our kids drive off to their homes in Rochester. The house now quiet, we relaxed and enjoyed the aftermath of a wonderful weekend; reliving all the special moments, unwilling to let it end.

As we had for the past week, we continued to sleep on the main floor, still hesitant to try the stairs too soon. We settled in for the evening. Rich’s cough, though, kept tickling his throat. His side mildly sore from a week of coughing, the muscle pulled from the exertions. Overall, not problematic but annoying. Yet in an instant his body is in conflict… a cough and a sneeze explode at the same time and it’s as if his rib is physically torn apart. He screams in agony, holding his side as he falls out of his chair from the force.

Immediately, Nick and I rush to get him to the ER, calling the doctors on our way. Once there, like that little plane so long ago, the ER moves slowly on holiday weekends. After what seems an interminable wait, Rich gets a CT scan… riding off on the gurney smiling and waving goodbye to me like Queen Elizabeth. Like me on that stupid plane. As night once more becomes a new day, we get the results: lungs clear…rib unbroken… muscle torn. Sent home with oxycodone for the pain and valium to relax the muscle and advised to see our doctor within 24 hours. Thankfully: discharged. We feel reprieved.

The following day we visit the pulmonary doctor. She confirms the finding on the radiologist’s report and sends us home with some cough medicine with codeine to use in a few days when the ER meds run out. Calm the muscle, let it heal. Happy the lungs are clear.

Two weeks later, there’s still some pain… gotta be careful not to use core muscles for now… but overall healing. Cough for the most part is gone. Creeps in when Rich gets tired, but mostly gone.

So we continue to make plans. This time we revisit one we had to bypass in the spring when Rich was not up to the event… seeing the new show “Something Rotten” on Broadway. What better time to go than Broadway week? We forgo dinner in the city… that would make the night too long right now. Rich instead decides we’ll walk to and from Penn Station… it’s a beautiful night, just right for a slow stroll.

And it works. Tons of laughs, lots of fun. Great night out.

And we pay for it the next day. Exhaustion, swollen legs, foot pain and that pesky rib acts up. This on top of the continuing prednisone withdrawal and all the baggage that it brings with it.

Which all begs the question, how do we get out of this patient mode? Part of it is physical. But as the saying goes, a body in motion stays in motion – A body at rest stays at rest. We come up with a plan to create a routine of small tasks that will make the house run smoother and get our non-patient out of patient mode… work the mind and body.

The harder part is the mental. How do you stop thinking of yourself as a patient when every time you try, albeit by going unintentionally overboard, it sets you back? The frustration is overwhelming. We feel lost.

Baby steps seems to be the key. And that’s a hard way to proceed when you really haven’t done baby steps in sixty years. It is dispiriting when so many attempts create such havoc, but we have to learn from each one that the amount of extra effort needs to be very carefully calculated. And that there will be setbacks, but we can’t let them stop us in our tracks. One of Rich’s favorite pastimes is cooking. With the restrictions he’s had and the exhaustion, both mental and physical that the medications bring, he’s not had many opportunities this past year. But with Mr. Asimov’s words in our head, we make a plan to find interesting simple new recipes and Rich will go grocery shopping each day for fresh foods to fill the ingredient requirements. His day will be filled with preparing dinner with rests in between so as not to overdo.

For two days, we have excellent results and delicious meals. And then a fever flares again. We sit and look at each other. What to do? It’s not a huge temp… it just hovers above the “call it in” level. We decide to ignore it. It responds to Tylenol… we wait til morning and discover then the fever is gone.

We discuss how, pre-cancer, this temp wouldn’t even be a blip on the screen. Rich probably wouldn’t have even taken his temp but brushed off the chills he felt as a result of a rather cold marketplace. We discuss how our need to respond has changed with each successive fever over the last nine months. This time, there is no change in breathing or oxygen levels. The only medication needed was a couple of Tylenol… no nebulizers, no ER visit. In the grand scheme of things, this is an indication of some very significant improvement! We begin to move mentally out of patient mode. We’ll need to keep aware of body changes that could be problematic but decide that with caution, we can analyze these changes and review them with a fresh perspective.

The theologian Martin Luther wrote a commentary on the New Testament’s Epistle to the Romans. This book in the bible is full of focus on spirit… grace, transformation and salvation… a fitting one for our current place on our journey. Luther’s commentary says “To progress is always to begin always to begin again.” And so, as always, we begin to begin again… towards grace, transformation and salvation.

Renewal.

Joy is in the ears that hear

Each year, there is a unique gathering of people. In a sleepy suburb with long driveways, at a certain time of day on a certain day of the year, if you look closely, you will notice an increase in cars parked along the side of a certain road. The owners of these cars all seem to be headed towards just one of those long driveways, curiously laden with chairs, coolers, tables, umbrellas and, every now and again, a grill.

Rich, Nick and I have been blessed to be amongst those whose car is parked and whose hands are laden. And when you get to the backyard of that certain house, magic occurs. Music fills the air for hours on end and there is such a celebration of life that it fills your soul and blesses your spirit.

I’ve always felt there is something special in the harmonics of music. That moment when you are in a chorus, singing out, or in a band, or orchestra, playing your instrument and the air simply buzzes with the shared frequency of the music. It’s like nothing else, you feel it in your core. When a chord progression is so unexpected and yet so beautiful, it can bring tears. The emotion of music. The feeling. We’ve seen its power.

There is a wonderful documentary on the effects of music on those with dementia called “Alive Inside.” The trailer alone can make you feel the joy that music brings to these patients. My father’s Alzheimer’s took him to a different place in time than the rest of us. Regardless of where he was in his space/time continuum, Nat King Cole or Glen Miller could always grab his attention. If he was anxious or restless, their music would always settle him down. Gone would be the demands to go home to that “other house,” instead, he would sit contentedly and tap his fingers to the beat and sing along.Certainly does “Musick hath charms to soothe the savage breast.” Its effects are so deep and elemental that dementia can’t hide it away. The memory of those times with Dad run deep. Our daughter Emily, as she drives the kids back and forth to their activities, will play that same music and brings those days with her PopPop back.

Our son Nick spent a good part of his toddler-hood in silence. When his vocabulary dwindled, one word was always to remain… “music.” And at one of his IEP meetings with the school district where we mapped out our plan for him for the year, his therapist said “We recommend additional sessions of music therapy and dance music therapy.” When asked the reason she replied “Because he loves it so.” This spoke to us, not only because of the sensitivity of the therapists who worked with him, recognizing the response he had to music, but to the power that music had to reach a child who did not make eye contact, did not cry out loud, did not laugh out loud. But put on the CD of “A Child’s Celebrations of Song” and Nick would be sitting rapt, in front of the speakers. In his own way of speaking, he would call out his names for the songs as he heard them. “OH! ‘DucklinDucklin’! Is ‘DucklinDucklin’!” Oh the delight! Eyes wide, face brimming with excitement. And as Hans Christian Anderson, whose biographical movie spawned that “Ugly Duckling” song once said, “Where words fail, music speaks.” It has that power.

Lately… and once again… we are in the dark grey days of prednisone withdrawal. That dysfunctional adrenal land where there is no energy, no appetite and the days have a monotonous sense of everlasting sameness. Drab, dull, dense. We had thought we’d be in a different place of recovery by now. Instead, it seems to be a continuing loop of prednisone withdrawal. As always, Rich’s patience for this phase of treatment and his strength of will is inspiring. We continue to look forward the end of the tunnel but some days that tunnel seems just so long! To counter these effects we map out plans: theater tickets, upcoming weddings, gatherings. Things to look forward to. Richard and Noelle’s new baby in December to welcome. Life is good! Some plans may have to change, but sometimes it’s the planning that holds our excitement.

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In the midst of these dim days, it was, therefore, an especially wonderful moment when we sat in our chairs in that yard on that road on that day surrounded by that music. Rich leaned back in his chair, pained neuropathic legs raised to keep the swelling down, eyes closed but with a look of peace that had not been there for a while. The absolute power of music made physical. He lay there and let the sounds, the harmonies, the frequencies of our friends’ voices flow around and through him. It was a magical moment when the confluence of memory, fellowship and sound all merged into one. Alive Inside.

Each year in that yard, t-shirts are sold to raise money for breast cancer research. This years’ t-shirt says “The Ends Justifies the Meades”… Thanks to Greg and Kathy for once again hosting Meadestock, where magic is made. And thanks to all the Meades for your continuing love and friendship. No justification needed. Priceless.

Footnote (non-neuropathic): Joy is in the ears that hear…the title of this post kept on popping into my head. Where it is from and how we came to find it is unrelated to this particular story in some ways, but in others, so right. Rich and I were on our honeymoon, coming back from California on Amtrak when the train stopped for a while in Philadelphia’s 30th Street Station. I got out to stretch my legs in this magnificent station and wandered, as is my wont, towards a shelf of books in a corner store. All the selections were of the “I’m OK, you’re not right in the head” kind of books. Except for one… a SF/Fantasy book. Our shelves at home have a place for Tolkien but for the most part, we go for the more science based fiction within the genre. The Dune books straddle that very fine line, the Myth series made us chuckle for a book or two, but for the most part, dragons didn’t fall into our norm. Give us some Arthur C. Clarke or Ray Bradbury any day. I’ll hitchhike any part of the galaxy. Once I picked up the Shannara series of books by Terry Brooks only because the cover art was by the Brothers Hildebrandt… and I love their Tolkien calendar art… but was wildly disappointed. If Mr. Brooks could have stolen more of the plotlines of the Lord of the Rings, he would have had to have called is hero a hobbit. But I digress. Here I was with a dilemma as I searched for some reading material and the only thing available of interest was yet another probable rip-off of Middle Earth. The cover even hinted of a bit of the Brothers’ artistic style. I vowed that I would demand a refund from Del Rey books if this turned out to be. Maybe even send the Messers. Hildebrandt a sternly worded note regarding their business choices. Little did I know purchasing that book, “Lord Foul’s Bane,” would start us on a captivating series that spanned thirty-six years of its writing.

Saltheart Foamfollower, one of the Seareach Giants, the Unhomed, is a character that makes us smile, regardless of where in the story we are. His words, the full quote, seem so apt for the journey that we’ve been on… “Joy is in the ears that hear, not in the mouth that speaks. The wold has few stories glad in themselves, and we must have gay ears to defy Despite.” Once again, we’re reminded that it is how we approach what life brings us that makes all the difference.

The universe is trying to tell us something!