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.