Going Old School in 2018 – a look back

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

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

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

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

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

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

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

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

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

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

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

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

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

Huh?

With a sloppy grin, Rich repeated “ACTUATOR!”

He babbled on and then dozed off again.

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

???

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

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

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

Sometimes, old school is the way to go.

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.

How Do You Spell Love?

The sound of laughter fills the house as the grandkids tumble into Rich’s lap. It was not too long ago that one small step by the littlest of toes on Rich’s feet would have had him scream in agony. Now, he’s full of smiles as they clamber over his feet and up his legs to get his attention. The impossible has become our new reality.

Our goal these past six months has been to try and resolve the neuropathy that has plagued Rich as he went through chemo. Instead of going away as it did the decade before, its intensity increased. Numbness spread. Spikes of pain would have him in tears. Spikes that were at times unremitting. And so we began with the Cymbalta which gave us a fifty percent reduction in the neuropathy but didn’t do much for the spiking pains. We then added medical marijuana; visiting those eerie men in suits to get the legal prescription filled every month. The relief was now at seventy five percent.

But those spikes continued. We were given methadone but were hesitant to use it as the directions seemed to indicate they were not an “as needed” medication. We held off. In September we visited our Ketamine group. At first we balked at the idea of this protocol. The drug is also known on the streets as Special K, the date rape drug, and is also used in veterinary medicine for anesthetizing horses. Horses! It makes you think twice.

20170612_121430Weighing our options, we decide to give it a try. Our hope then and now is that it would allow us to wean off the other meds and lower Rich’s dependence on prescriptions for relief. And so, we began. Unlike so many other infusions, Rich is alone in the treatment room; I’m not allowed to stay. The idea is to keep him quiet and still. With possible side effects, all variables are removed. No music, no reading. Low lights, warm blankets and a slew of leads checking his vitals sticky taped to him everywhere. He is under constant monitoring. Over a period of four hours, a small dose of ketamine drips ever so slowly through the IV and into his arm. He dozes.

20170612_122133The effects of the drug as well as the relaxant they give him to forestall any hallucinatory dreams gives him rest. He’s released with warnings as if he’s had surgery. In truth, the experience is exactly the same, just without a knife. As we wait for our ride home, Rich realizes that he has no spiking pain and we share a grin. When he gets home, he sleeps.

The next day, he feels refreshed and so we see that little bit of improvement, subtle but there, and we rejoice. Week two seems to follow the same. And again, the improvement builds. We feel a sense of relief. We’re advised to continue on the Cymbalta and MMJ and we do. They are our safety net. And so we go into week three with high expectations. How foolish! The night is filled with spiking pains, unrelieved by anything but methadone. Body aches are palpable like a revenant in the room. The misery is thick as a fog that sends a shade over any hope we may have had. The internet offers us some glimmers. We read that others have experienced this as well. We wait for morning to call the ketamine group who confirm our suspicions… par for the course. They just never know the timing of when or if. As with many discomforts on this journey, a good sign is among us. We’re told Rich’s nervous system is resetting. Where previously the bed sheet against his feet would have brought agony, the ketamine is pushing back the pain volume knob and bringing it to the norm. We’re looking for his feet to just acknowledge the existence of the sheet instead of bringing on tears. A methadone tab gets Rich through the night. It is effective in random administration. We’re grateful.

There was some trepidation as we approached the fourth infusion. Neuropathy was now so minimal as to be off our radar. Gone were the pins and needles and the burning pain. The frequency of the spiking pains and their intensity diminished more and more each day. As if in a final farewell, a cluster of weather affecting barometric pressure brought on a flurry of spikes that were concentrated in one spot. Agony! A single Methadone tab was once more brought into the mix. The tide has turned. To our delight, it was as if a switch had indeed been flicked and the improvements began to come faster and faster.

Now, after the last of the infusions, week five began the miracles. Feeling began to come back into Rich’s feet. Between his toes is still numb, but for the first time in a very long time, he can feel himself wiggle his toes. And oh! The texture of socks! Everything but those spiking pains…. They don’t register. The have become a mere blip. There is a confidence in Rich’s step. His pace has improved. His cane only comes into use when tired or vertigo hits. He delights in the sensation in his toes. We’ve been told we can expect three to six months of relief. Rather than count the days, we head off to celebrate. One of Rich’s goals expressed when he was first diagnosed has been to visit Colonial Williamsburg.

15000741_10153501587557824_2703793561621062239_oSo for our anniversary in November, shortly after the last infusion, we take our Amtrak train and spend an extended weekend sleeping, eating and roaming in nothing but historic buildings. When the tiredness hits, we only have to look out through the old wavy glass pane of our room where once Martha Washington’s family lived to watch the fife and drum corps make its way down the street. To see groups wandering by lantern light. And when rested, to step out our door and cross the cobbled streets to the nearby tavern for a few small plates and to raise a glass to the musicians performing. As with all our travel, we are renewed.

 

At this point, now January, we are now ending our third month since the ketamine treatments ended. After my brother’s death, we experienced setbacks. Bronchitis due to the crowds of the wake and funeral. And again bronchitis following the traditional Greek forty day memorial. Germs seemed to find Rich wherever we went.

We were comforted by the knowledge that a year prior these infections would have manifested as pneumonia and required hospitalization. But more troubling still was the recurrence of spiking pains. Has our reprieve ended so soon? As is our wont, we looked at the data. Stress seemed to have brought these pains back into our lives. Each time that spiking pain manifested itself, it was during times of either stress, such as the wake and funeral, or, a change in routine as it would be with the kids home and the regular day to day tasks were thrown to the wind. Even in anticipation of an event that may prove to be too much.

We’ve discussed biofeedback with our pain management gurus and they are looking into where we should go. In the meantime, we find that just the discussion of the possibility of it being stress-induced, however subconsciously, has made a significant difference. The mind/body connection is at work. That Rich is open to these possibilities is a blessing.

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As our pulmo doctor once admonished Rich, “When you are well is up to you.”

And so, we once more got aboard Amtrak’s Lake Shore Limited and headed up to Rochester to celebrate the turning of the year for our two littlest grandsons. As the weekend comes to an end, Rich sits contentedly tired on the couch and the laughter of both man and boys is heard. Our family rejoices that those little feet that climb to sit on Poobah’s lap to demand a kiss and a snuggle have not brought pain but pleasure.

Piglet: How do you spell love? Pooh: You don’t spell it, you feel it. ~A. A. Milne

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.